TDM-1 side effects

[waterdreamer]

I am currently on a TDM-1 trial and I would love to hear from those of you who have been on it, what your side effects were and how long you were NED on it. Also if you did progress, what your next treatment option was.
These are my side effects after first treatment:
Neutropenia, platelets dropped from 220 to 47 a week later and then back upto 140 two weeks after chemo.
Menorrhagia, the heaviest periods that I have ever had in my life, lasting 8 days.
Cramping in my fingers and toes.
Loss of appetite, first week after treatment, returned with a revenge in 2nd and 3rd week.

I am having great difficulty getting much info on this topic, so any feedback is much appreciated.

Thanks
Fern

[Jackie07]

Hi Fern,

There are quite a few members who have had experience with T-DM1. I hope they will chime in soon. Meanwhile, perhaps these threads will answer some of your questions:

http://her2support.org/vbulletin/showthread.php?t=48343&highlight=T-DM1+effect

http://her2support.org/vbulletin/showthread.php?p=248948&highlight=T-DM1+experience#post248948

[Cellomomof5]

Hi Fern,

I am also in a T-DM1 trial - I just had round 3 yesterday. My notable side effects have been:

• Neutropenia - my neutrophils dropped below 1000 and I had to have a T-DM1 dose reduction. Even with the dose reduction, they are still low.
• Muscle and join aches, pain & cramping - consistent throughout the three weeks - worst in hands and feet
• Mouth sores & dry mouth - better with dose reduction and a prescription for Chlorhexadine

Other side effects have been minor (drippy nose, mild platelet reduction, liver enzyme elevation). I also had loss of appetite the first week that "returned with a revenge" the second week - I ended up gaining weight overall, and am working hard to try to stabilize it. My doctor suggested drinking tonic water to help the muscle spasms - I'm going to try it. My night sweats & hot flashes have increased, but they think that is my hormones still all over the place since the A/C - I haven't had a period in three months.

I don't know about you, but for me, the achiness and stiffness is pretty significant, and hard to live with. Every time I sit or lie down, getting up and going again is painful! The rest is livable. I'm hoping I adjust to it as the year passes. How long have you been taking T-DM1?

Thanks for posting this - I've been interested in hearing how others are faring. Which trial are you in?

[waterdreamer]

Hi Karen,
This is the clinical trial which I am on.
http://clinicaltrials.gov/ct2/show/NCT00679341?term=tdm-1&rank=2
I was on the comparison arm but switched to TDM-1 when the doctor called progression in first left rib. The cramping was only bad for me in my fingers and toes, immediately following my first infusion. Today will be my second infusion. I like to take heating pads with me, and place them over the areas where I have the cancer, during chemo to encourage greater blood supply to these areas.
I am also taking a liver detoxifier and regenerator to protect my liver (it contains milk thistle). I will post again after todays chemo. Thanks for replying.
Best wishes
Fern

[KDR]

Hi, Fern,
Wishing the best possible outcome and pain-free treatment with T-DM1! I tried to get it on a trial recently, but wasn't randomly chosen. So far, my new regimen is working very well. I'm hoping that T-DM1 will be approved very soon. I've been hearing late summer (possibly) from an activist. Hope the milk thistle works in your favor. I've been attracted to it as many members here have had great success, but three doctors and a nutritionist I consulted don't want me taking it while chemo is doing its job. Did you tell your onco you are taking it and what did he/she say?
Thanks and best,
Karen

[hutchibk]

I have had 5 treatments and so far not bad at all. First few days After a treatment I get a mildly bloody nose and drippy, my red blood cells were a little low this time and they think I should eat a little more w/ iron... but my platelets are normal, my white counts are good, my echo has remained stable, no flu like joint aches since my first treatment.

I have mostly had more fatigue, having a "down" day or three (light fluish feeling and more tired) during each 3 week cycle, but that is just down to one day each cycle now. And dry mouth mostly at night when sleeping. Side effects seem to get a little better each time except for dry mouth. (I am in menopause so I can't speak to periods).

Best wishes to all.

[chrisy]

Hi fern,

I sent you an email, but adding some comments here re the milk thistle.

I had pretty severe elevation of LFT's and practically lived on a liver detox diet for months - lots of carrot salad, beet juice, green soup/juice and milk thistle. Of course I also ate other stuff:)

My doctor had no problem with these, including the supplements. I also took Olive Leaf and Coq10 regularly and bits and pieces of other supplements during the 3 years I was on TDM-1. The only one they nixed was Curcumin. But I always make sure they know what I'm taking, because of the potential interactions with the therapy.

Brenda is right, the flu-y side effects got less intense for me, too.

Karen, I haven't heard anything about the FDA reconsidering the TDM1 early approval - it might just be wishful thinking, but I hope you're right!

[yanyan]

Hi, Waterdream. My oncologist office is in west hills. I live in Chatsworth.Would like to connect with you if possible. Good luck with your treatment!

[waterdreamer]

Please email me at fernsiman@gmail.com and we can connect with each other.
Hope to hear from you soon.
Best wishes
Fern

[waterdreamer]

I wanted to share this with anyone doing TDM-1. Remember that TDM-1 does not cross the blood brain barrier, and so while it works really well for the rest of your body, your brain is unprotected. I know a lady from one of the other boards, who was doing really well on TDM-1 only to discover that she had 15 brain tumor mets, and she was very unhappy with the way she was feeling after radiation. In light of her findings and my poor vision in one eye, I just did a MRI and we found something small in my head, which needs further investigation. So I may or may not continue with the trial. I think on the TDM-1 they should also give the ladies some straight herceptin, which will cross the BBB and give a certain amount of protection. I think they should also switch to doing full body MRI's so that things are caught early, and we don't have to deal with so much radiation from CT scans. Those are just my thoughts.

[Lani]

herceptin does not cross the blood-brain barrier normally

there is some hypothesizing that it might cross once the barrier is affected by tumors

Those with brain mets tend to do better if herceptin is included in their regimen--several hypotheses regarding why have been entertained

Hope this helps!

[hutchibk]

As Lani said, Traztuzumab (Herceptin) is not known to cross the BBB because of the size of molecule that it is, but theories suggest that it might once the BBB has been rendered "leaky or compromised" either by tumor or other treatments. TDM1 is Herceptin that incorporates a chemo into the molecule, that's what the T is in the name, Traztuzumab.

I am doing really well on TDM1 as well, but I also get 3 mo. brain MRIs along w/ 3 mo CT scans, and when called for, PET scans, so that I know what is going on in my whole body. My imaging center follows all new guidelines that have recently recommended significant radiation reduction of CTs. Whole body MRI is not known to reveal tumors in the torso as CT or PET/CT do. MRI's strength is in revealing (and providing measurement of) tumors in specific areas such as the brain, a breast, an organ, etc. It is not a whole body tool.

Currently, our brains are "unprotected" from getting brains mets. There are treatments that treat brain mets (targeted radiation methods, whole brain radiation methods. or chemos that cross the BBB... such as Tykerb, carboplatin, etc) but no protection from getting mets in our brains. The best protection is thorough and regular scanning to catch anything that shows up when it is early and small.

[her2 newBEE]

One interesting drug to watch for will be everolimus (Affinitor). There is currently a Phase III clinical trial for MBC, but I believe this is a trial primarily as a first line of treatment.

In any case, the mTOR inhibitor everolimus is thought to cross the BBB. Everolimus has FDA approval for renal cancer, but not yet for breast cancer. Phase I and Phase II trials for MBC have been quite promising.

[waterdreamer]

I am staying on the TDM-1 trial (Hooray) and do my 4th treatment on Thursday. The Bone met to my first rib and surrounding tissue, has changed in appearance and the soft tissue has gone from 2cm by 2cm to 1.5 x 1.5 cm in a period of 9 weeks.

[Ellie F]

Brilliant news. Really hope T-DM1 continues to work for you. Please let us know about your brain MRI findings. Hoping its nothing of concern.
Ellie

[hutchibk]

Curious if the spot they have seen in your head is in the brain or in the skull/optic nerve area? I have had a tumor on my infundibulum that is very near optic nerves, yet didn't sit in a position that affected my eyesight. If it turns out that it is in bony skull area, then it is outside of the brain and the blood brain barrier. Just FYI. Good question to ask your oncologists.

[waterdreamer]

I am seeing the neurologist on Thursday and will discover if it is intra or extra axial. I am just extremely fortunate to still be on the TDM-1 trial. Will keep you updated. Obviously, I am very interested in any treatments that cross the BBB.

[KristinSchwick]

Hope you get some good news soon.

[Ellie F]

Hope it turns out to be benign. Thinking of you and hoping for the best.

Ellie

[Laurie7]

Hi All...
I too am on the T-DM1 trial...August 30th will be my 3rd treatment..My dose was also changed due to a drop in platelets and high liver enzymes. I also noticed my period was heavier with the second treatment and experienced the nose bleed but not bad. I'm starting to have dry mouth as well. What I would like to know is has anyone experienced difficulty taking a deep breathe or a heavy chest feeling while lying down..this happens to me after the first few days of treatment and usually lasts 3-4 days. Also, this is the first time I'm hearing about the BBB

Laurie :)

[Vicky]

Hi everyone-

Yes Laurie, I too have had the feeling of an elephant sitting on my chest the first few days after TDM1 treatment, as well as thickening feeling in my throat for a few days. I just completed round 7 and I have an achy-flu-like feeling the first few days, drippy nose/nosebleed, dry mouth and break through nausea on occasion.

But it continues to keep me stable! I had a mastectomy last Friday, came home Saturday and was fit for chemo with TDM1 by Tuesday. Pretty amazing I would say. I continue to feel well two out of the three weeks after I have completed chemo. I truly feel fortunate to be on the trial and continuing on with TDM1, but definitely need to ask my ONC about the BBB and TDM1's ability to cross it.

[hutchibk]

I have crazy dry mouth from TDM1, too. And mild nose bleed in the first 3-4 days after a treatment. But that's really about it. I just had treatment #8 and the fatigue and lite fluey feeling has really dissipated for me to really not having any at all.

[Laurie7]

Hi again...
All my symptoms are pretty mild, and from the way it sounds pretty normal, but the heavy chest feeling bothers me a bit...Vicky, did you mention it to your onc? If so, what did they say? My onc did a CT after the first treatment and everything came back normal, then it happened again with 2nd treatment...Just wondering if its a common side affect...

Laurie :)

[hutchibk]

A heavy chest feeling should not be taken lightly. Mention to your Onc at once and possibly a cardiologist... Herceptin is known to cause debilitation of the LVEF (the ejection fracture of the left ventricle muscle of the heart) and in older patients can cause congestive heart disease. I'm not saying what you are feeling is even that or is that serious (that's for your Onc to determine), but it could be a by-product of the Herceptin part of TDM1 taking a hit on your LVEF... and in younger patients, it can be reversible.

I haven't had the heavy chest at all, but I did have my LVEF fall below 50% on ECHO just before I was scheduled to start TDM1. In three weeks, I was able to strengthen the left ventricle with the help of a cardiologist and my naturopath. I diligently walk or exercise 30 min per day every day (strengthens the muscle), I take Lisinopril (Rxed by cardiologist), and I take CoQ10 and fish oil. (along w/ my other vitamins/supplements).

Just please be sure you tell you Onc and see what they say! A CT won't show it, it requires a MUGA or ECHO to determine the functioning of your LVEF.

[Laurie7]

Thanks Brenda for your reply...thats exactly what I was thinkin..I will mention it to her when I go next time...

Laurie :)

[Vicky]

Laurie,

I've only had the heavy chest feeling a few times, and it doesn't last for long. Echoes have been part of my study and they are frequent, every couple of cycles and they haven't shown anything. But yes, definitely worth mentioning to your Onc!

[Laurie7]

Thanks Vicki

[waterdreamer]

There was a small metastasis to the brain, which was radiated at UCLA using the Novalis, which is more advanced than Gamma Knife surgery. See this link for more info http://neurosurgery.ucla.edu/body.cfm?id=408 Three months later and over 10 TDM-1 treatments, my brain MRI is clear, and the rib seems to be healing, while the T2 remains stable. The T2 could also be permanent bone damage. I take potassium/magnesium supplement every night for my heart, and I have not had any more cramping. I am taking the Now liver detoxifier and regenerator, and I believe that too is helping.
Wishing everyone a very happy New Year, with lots of good news on the health front.

[waterdreamer]

I have now completed my first year on TDM-1. My side affects are nausea the day after, and elevated liver enzymes and lowered platelets. I take potassium/magnesium supplements and I have had no further muscle cramping.
I sometimes have headaches, but that may be related to periods, or onset of menopause.
Lately my hips are hurting a little, but it may be unrelated to the TDM-1 or cancer.
I did have a brain metastasis, which has now been clear for 6 months, I am due for a nine month scan in June.
I also get a drippy nose, especially during and after exercise.

Looking forward to TDM-1's approval. Please post on side affects. And solutions that have helped with side affects.
Thanks

[Unregistered]

Praying for great results for you on your next scans! I have been on T-DM1 for 10 months...so far things are staying stable :)) Nose bleeds is pretty much the only side effect I have..of course besides the elevated liver enzymes and low platelets..They lowered my dose again because of the elevated liver enzymes...(I think this is the last time they can lower it) so hopin and praying it keeps working! with the first 3-4 cyles I was experiencing a very heavy chest feeling...thankfully that does not happen anymore :) going for my 6 week scans this Friday..fingers crossed! XX

[Unregistered]

Hello All.
I have been on TDM-1 for 1 1/2 years (every 3 weeks). My oncologist told me at our last visit that it should be on the market by the end of this year. I am wondering if anybody has had bleeding from the mouth/gums as a side-effect? If so, what have you done to counteract it? Thanks very much.

[waterdreamer]

Hi Unregisted guest,

I do get bleeding from my gums but it is usually soon after treatment and is very minimal. I believe that anything we do to improve our platelet count will help with bleeding issues. These are the things that are supposed to improve platelet count:
Papaya Leaf infused in hot water and drunk as a tea. Shark Liver Oil, Melatonin (if I start feeling drowsy during the day, I stop taking this) I also take chlorophyl 1 - 2tblsp in plain water every day, as this is good for the blood. I have also started taking lithium orotate at the same time as eating crushed flaxseed, to improve platelet production. Also, my diet contains lots of green leafy vegetables. No added sugars. I too have been on TDM-1 for more than a year, and it would be really interesting to talk with you further, please email me at fernsiman@gmail.com There are many ladies on this board who would appreciate you registering, as I am sure there is a lot you could contribute to the discussions.
Best wishes
Fern

[KDR]

I, like Fern, might experience some pinkish saliva in my mouth after brushing teeth or flossing. Lots of cold water helps. Also try to keep your nasal passages moist as bloody noses are a known side effect.
Karen

[Lori R]

Hi ,
I am bumping this string up for Nancy L, who was questioningTDM-1 side effects and their timing.

There is a good news story, so keep reading.

I had my first treatment of Taxol + TDM-1 4 weeks ago. I felt fine driving home Friday evening and even ran some errands on Saturday. WOW....livin large. Curled up on the couch Saturday evening where in the span of an hour I had severe chills, and energy dropped to 10% normal. It was all I could do to get to my bedroom. Slept in clothes that night.

Sunday felt horrible with flu symptoms, nausea, headache. SOOOO afraid this was going to last for days. At 4 p.m on Sunday the clouds began to part.

Lesson learned.
I didn't drink NEAR enough water...Hydration is key to feeling better. I can tell immediately after a big drink.
I didn't have anti-nausea meds on hand. (never needed them with) NOT smart. No I have the meds.

2nd TDM-1 Dr. prescribed a hit of steroid. I REALLY don't want to take unnecessary drugs, so I cut the dose in half. The weekend was OK!! Drank and drank (water that is), took antinausea meds and had PJs on at 6 p.m on Saturday evening.

I was able to be out and about both days. YEA!!! Celebrate. The Onc. said that some people experience a "violent" reaction (I am pretty sure my words not his), and that the reaction reduces with each progressive treatment.

Runny, slightly bloody nose
Fatigue

I hope these insights help.

It would be GREAT if you had someone drive you. I drive myself, as I am hanging onto my independence with every bit of strength I have. I hope it doesn't prove to be stupid.

Please keep us posted on your experience!! Lori

[waterdreamer]

I have now done 22 rounds of TDM-1. I was having a heavy chest feeling and shortness of breath. So I took a 5 week break from TDM-1. My CT showed signs of alveolitis and inflammation of the lungs. My doctor did a dose reduction and my lungs have felt slightly better this last round, but I still have bouts of experiencing shortness of breath. My latest bloodwork showed lowered WBC, platelets at 91 and the usual elevated ALT and AST. I did go to a cardiologist and he said my heart is perfect. So the chest pain is lung related in my case and not heart related. So far all is good, and I will update again.

[michka]

Thank you Fern for sharing. I had started a thread asking if anybody had chest pain and breathing problems with TDM1 and knew the reasons. 2 or 3 persons reported chest pain and one lung inflammation. I still have the same problem and my heart is fine. One Dr even told me to take a tranquilizer. Did you ever feel like punching a Dr in the nose? Well I did. :-) . ...but I just didn't answer because he is a nice man...(and I don't "punch").
I will have the onc really look at my next scans to be sure there is no lung inflammation. I had a first indication through Barbara H who reported she had to stop and now through your post. I ergo know what to watch. I only had 8 rounds and hope I can continue a long time.
Otherwise my side effects are nausea the first week, fatigue, neuropathy that wakes up at each cycle (induced by Taxol), spots and big pimples on my face the second week, very very dry eyes nose and mouth. Some rounds are better (or worse) then others without being able to know why. I am less fatigued than in the first cycles. I also had pains during my first rounds but not anymore. The very big fatigue and the pains in the beginning maybe came from the destruction of cancer cells or it is just my body that adjusted. But I prefer the first explanation!
Michka

[Mandamoo]

Just to add to the info:
I had my first dose today - tonight I am simply feeling a little lethargic and have no real appetite. I slept for a couple of hours this afternoon. We'll see how the next few days go.

[MikeF]

Barb had her second treatment Tuesday after an uneventful first on the 28th of Aug. She did feel some pain in the tumor site in her left breast but felt like it was more in her shoulder. Now after the second treatment she has developed a cough and felt achy all over Wednesday. Its so hard to know what is treatment related and what may simply be a bug. We had our two grandsons over Tuesday night only to find out yesterday that the oldest had to leave school yesterday and threw up when he got home. Just what Barb needs right? She said she felt OK this morning but didnt get a good nights rest. Personally I think theres a war going on at the tumor site in her breast and those little TDM-1 boogers are kicking some cancer A_ _.

[Pray]

Please God let tdm1 be thee one for all of these wonderful women! Amen!

[MikeF]

Came home from work to find Barb running a high grade fever 103.5 and her heart rate is 110 called her doctor. I dont think this is normal side effect probably the bug our grandson brought over Tuesday night.

[Mandamoo]

I am now day 4 - yesterday I had a low grade temperature and achy muscles and joints. My appetite was better. Fatigue had me in bed all morning but I was in my garden for a while in the afternoon.

[Nancy L]

Thank you Lori for bringing this thread to my attention. I read everyone's comments and found the information useful to properly set expectations.
I had my first infusion yesterday around noon at the EAP Stockton site (Dr. Medhi and staff are fabulous.).

I was fine until around 7pm when I crashed. I woke up this morning with a low grade fever, body aches and a headache. I felt lousy all day. Hoping it just means the drug is working.

[Pray]

Nancy, I too pray it is working for you and all the others! Gods blessings to you. I hope your side effects subside quickly!

[radiant]

Hi Nancy and others!

I started t-dm1 last week in Stockton as well. I would have to say my first dose side effects were INTense. I was not expecting this. I've been on the chemo merry go round for years, and this was one of the hardest ever to go through.

I was knocked out for five straight days - today is my first day up. I have mets in the liver - within 2 hours of infusion, it felt like my liver swelled alot, pressed on my stomach and stayed that way until yesterday. So, 4-5 days. Something is still pressing, but not as much.

I was very, very weak - unable to support my own weight. Vertigo at night and am from days 3-5. Strong headaches days 1-5.

I feel much better today, and too hope this is a good sign. I haven't heard of anyone having s/e's like this on tdm1. I will let the trial people know - but wanted to ask here as well.

I, too, felt like it means it working. For me, it felt like I had literally ingested a poison with this first dose of tdm-1.

Did anyone else get any s/e's close to this?

Thanks -

Kim

[KDR]

Hi, Kim!
Wow, it's been a while since we spoke, am sorry that over these last few weeks, never had the chance to give you the time you deserved via phone. So, you're on T-DM1! Congratulations!
I think the platelet wipe is hard, liver mets feel like they are being attacked (and they are), neuropathy...that's my story with T-DM1. This weekend I had swelling in the forearm and couldn't do a 1/4 turn either way.
I never had headaches. Are you on every third week? I go weekly. Any chance you could do that? Either way it's a lot of medicine to take.
Wishing you well, keep those healing vibes alive,
Karen

[Nancy L]

The chemo delivered in T-DM1 is very toxic. This article explains it.
http://www.usatoday.com/news/health/story/2012-06-03/herceptin-plus-breast-cancer-drug/55349184/1#.UGDTpOY92Eo.mailto

So I guess a few have lucked out with only a few minor side effects---good for them! And then there is the rest of us. I am into day 4 and feeling better but still in bed. I do think the pain in my shoulder is down. Hope it is the drug working and not my imagination.

[Mandamoo]

Hi Kim - my response was not so intense. I am day 6 now. Crashed with extreme tiredness within hours of the first infusion, no appetite slight nausea and headache. Day 2 - very lethargic, headache. Day 3 - crashed with fatigue, headache, low grade temp, muscle aches. Day 4 headache and aches but up and about - low temp at night. Day 5 - pretty good but still taking paracetamol for aches in joints and muscles and headache, afternoon rest. Day 6 - so far so good - don't feel normal (!) but ok so far.
I have lung mets - I've felt nothing alarming but have had slight chest heaviness but I also have a viral infection so who knows?
I hope the next one is better for you.

[Nancy L]

I noticed my link did not copy correctly. Sorry about that. Just google "what chemo is delivered in T-DM1" if you are interested in the article.

[KDR]

Nancy,
I do know one thing: the chemo in T-DM1 was shelved many years ago for being too toxic to give alone.
Thanks for posting.
Karen

[michka]

Kim (Radiant) I had what you described. Extreme extreme fatigue (I could not get up), bad nausea the first days, pain in the abdomen and in the thorax, headaches the first days...I am now at the 8th dose. The pain in the abdomen and liver disappeared after 2 or 3 infusions. I am not exhausted anymore. Just tried. I still have the heavy chest pressure and other problems BUT many mets are not visible anymore on the scans. So I believe that the terrible exhaustion and the pain was due to the cancer cells dying but it is my own interpretation. The Drs just noted things down. So hang on. After a few infusions it may improve a lot and what I hope is that at your next scan you will see the mets shrinking in your liver.

I am adding a question
My blood pressure is rising ans is now high. The cardiologist wanted me to start a treatment but the oncs asked me to wait. I am very worried about that. Did anybody see their blood pressure raise with TDM1?

[radiant]

Hi everyone!

Thanks for your responses. Michka - I am very grateful to
hear that u had similar s/e's. I was thinking it must be working
to feel this bad, since it's targeted.

I am SO glad to hear this is really working for you. Yesterday
I could get out of bed. Now it feels like bombs went off in
my abdomen area, and that there are holes in some places -
like my liver that my body is working OT to repair. My stomach
area is still swollen and sore. I'm sure thIs means it is
working.

Michka - I saw high bp was a side effect in 10% of folks. I
got bad high bp after being on Avastin for 18 months. I am
now using an essential oil blend to help with my bp - it's working. Plz
PM me if u want to learn more. France is a Mecca for using
essential oils medicinally.

Thanks everyone -

Kim

[MikeF]

Not sure if this needs to be just an update on Barb or an addition to TDM-1 side effects. Barb has had two treatments the last on the 18th of Sept. By the 20th she was running a fever of 103.5 and finding it difficult to breath. We ended up in the emergency room where they diagnosed her with pneumonia and plueral effusion. I've read where pneumonia can be a side effect, has anyone else experienced this. Shes had 11 days of oral antibiotics (Levaquin) as well as three infusions of Vancomycin early last week. All appeared well untill we decided to take a short trip to the coast this past weekend her fever returned along with a persistent cough so we returned home and had her at the doctors office Monday where the started another round of the Vancomycin. Hopefully the fever leaves before her next scheduled treatment next Tuesday. So I guess were not sure if this is helpfull for you TDM-1ers out there.

[KDR]

Hi,
Sounds like the pneumonia might be an aside from the T-DM1. Of course, I'm not a doctor, but we also have life's general ailments. Hope Barb is feeling better.
Karen

[Mandamoo]

I am now a week post my second dose. My bloods were fine. Second dose a week ago and this time no fever - just mild joint pain and fatigue and some nausea on day 2.
I'm not sure though how it is working. I have an asthmatic type of cough which I am not sure is post viral (I've had an upper respiratory tract infection) or the lung mets progressing. Progress scan on the 29th - hoping for a stable result.

[Nancy L]

I had my second infusion 3 days ago. It is amazing how different this one was from the first. Very few side effects so far--mild headache, joint pain and severe dry mouth. But I have been on high doses of prednisone since 10/10 for pneumonitis. I believe the steroids made the difference. Will see next time when I am not on the steroids. They were concerned that I continue to loose weight--5 lbs in past three weeks. Because the cancer has attacked my cranial and vagus nerve, I have a difficult time swallowing. Eating is a chore and I am really sick of Ensure. But I am hopeful T-DM1 will kill the cancer lesions on the nerves nd in time they will regenerate. My right vocal cord was paralyzed at my first recurrence 3 1/2 yrs ago. This time it hit my left vocal cord (controlled by vagus nerve) so my breathing and speaking are severely affected. I had to have an emergency trach during radiation treatment. Can't wait to get this out. But T-DM1 has to work first and the nerves have to regenerate---a lot to hope for.

[Mandamoo]

Hi Nancy - it's sounds like you are having a rough time. Glad this dose was easier - hopefully you will get good results so those nerves can regenerate.
Is the pneumonitis treatment related?
I rang my trial coordinator about my cough yesterday and he said there is another lady like me with lung mets and her cough became worse and first two scans showed stable then the third showed dramatic reduction - guess we all respond differently.
Seems we are pretty close in our schedule with this - are you on Theresa trial or compassionate access? I am due for scans on 29th October.

[Nancy L]

Amanda,

I have pneumonitis from radiation. I was denied on Theresa trial because of the radiation I received for severe pain. But I got into expanded access. Yes, we are similar. I was put on Tykerb and herceptin on my first recurrence. I was on this protocol for 3 1/2 years but I think it only worked for a little over two years.

It really breaks my heart to see young moms saddled with this fight. You are way too young to have to deal with all this. I really pray T-DM1 works for you so you can focus on your daughters.

[Nancy L]

I would like to ask about your blood work results while on T-DM1. For those who have been on this for awhile, do the platelets get hit hard every time or just when you first start taking this drug?

[KDR]

Hi, Nancy,
I've been on one year.
Platelets: YES. Hit every time. But rebound for next treatment. Expect bruising, too. I am on a weekly dose and close to the end of my trial. No tweaking until then. The study I'm on is to examine whether it's better to dose weekly or otherwise.

Best of luck to you,
Karen

[Mandamoo]

I haven't had any issues so far - bloods for two doses all completely normal.
I had my first scan yesterday - 7 weeks, 2 treatments - Stable lungs and smaller mediastinal nodes. Trial onc feels lungs are slightly better though not measurably so - nodules slightly less prominent though I wonder if he is just being optimistic. Report says some marginally larger, some marginally smaller, target lesions unchanged - overall tumor burden the same.
I am happy for stable but hoped for more.

[ANelson]

I will be receiving my third dose of TDM1 tomorrow. I receive it every three weeks. So far the first two infusions did bring my platelets down. Had to have a blood transfusion after the second dose. I have experienced severe headaches after each infusion which I now take a low dose steroid and they are usually gone by the third day post infusion. I have had to have a periencentisis done two weeks ago as I was retaining too much fluid which has messed up my digestive system since that time. My abdomen and liver have been swollen, however this is the first week that the swelling has reduced. I'm thinking it may be working. Other than that I have good days and not so good days.

Angie

[radiant]

Thank you Angie!

I've had horrible swelling as well. Dr hadn't
heard of that before either. Scary really.

I'm on my 3rd dose as well, and much less
swelling. But, my labs suck. I'm scared for
sure!

Kim

[Pray]

I'm praying for all of you ladies. Gods blessings to all of you.

Your friend,

Nancy

[phil]

Stable is good, Lorraine didnt get scanned until after 3 doses, had 3 out of 7 liver tumors gone. But her cancer was always around liver, and had been very aggressively treated all 6 yrs. some chemo every month. As the saying goes " Individual responses will vary " . that was jan 2011. got 7 doses at 3.6 , but plats did drop and each rebound was lower than before. so she reduced to 3.0 by later that Spring. got sepsis in April, almost dropped from eap. went 9 wks w/o tx .back on 3.0 by June. regularly every 3 weeks since. 1 tumor left Sept 2011. nov 2011 all gone , and invisible cancer squeezing right kidney ureter, bile duct gone too ! stents out ( which caused sepsis, if u have fever 100.5 dont wait like we did go to er, could have avoided sepsis ). If your plats drop and dont rebound , L.s went fro 223,000 to about 90,000 by 5 doses at 3.6, start support like we do w/ sharks liver oil, top quality fatty bone in steak ( not filet ), roast beef, lots ofgreens like kale, spinach , sweet potato, , lots of fruits, strawbwerries, blub, fresh pineapple, nuts . Its a kind of cavewoman diet . Some call it " neo-paleo " diet. God Bless, Good luck, soon will be approved ( before Christmas ? ) and give flexibilty

[ANelson]

Kim
When I met with my doctor on Thursday for my infusion they said that the swelling in my liver and abdomen is a response to the treatment. I also experienced swelling when I was on herceptin and Abraxaine. The swelling has gone down significantly on this third round. Feel like I have lost 10 pounds between loosing all the fluid and reduction in swelling. My liver enzymes are we're also high prior to his infusion, but always seem to go down by the next week when they take my labs again.
My side effects this time were dry mouth and fatigue on Friday. They have to give me pretty strong premeds before the infusion because i am allergic to herceptin. I have been sleeping since Thursday. Today I woke up with a backache and a mild headache. I am trying to resist taking the steroids as they really do a number on me. The doctor said if headaches get worse to take some. All in all the side effects have been better so far on this third infusion. The doctor also stressed to eat more protein as it ill improve swelling and energy level.

Angie

[Mandamoo]

This third infusion has been a bit rougher with fatigue and nausea but I'm ok apart from headache and joint pain today.

Phil - do you know of any successful stories with lung mets? The trial team have told me that they are seeing slower response in lung mets than liver mets and that the lung mets seem to respond slower. Fortunately all patients so far are still on trial and only one of the 6 prior to me was stable, the other 4 had all had at least a partial response and the longest participant is now NED after 12 months of slow regression.

My platelets have been higher on tdm1 than they were on tykerb and xeloda - so far no hits with my bloods - hoping it stays that way and also keeps working. My markers have never been reliable for me so they are not an indicator unfortunately.

[Nancy L]

My tumor markers have stayed the same for eight years and I really would love to understand medically why they believe they work for some and not for others. They still run them every three months even though they don't work for me. I can only conclude it is because they can bill the insurance for it.

It would be very interesting to see which types of mets are responding best to T-DM1. Even better to know why. I have never seen this kind of info for any of the chemos. The only person I know on this site who is similar to me is our dear Sheila and T-DM1 didn't work for her. The only logical explanation for me, if you believe what they say about how the drug works, is that the tumor characteristics have changed regarding her2 or multiple types of BC disease is going on. It is a puzzle I wish they could solve.

[phil]

I have heard of lung mets being knocked out by t dm-1. I didn't mean to sound flippant when i said " Ind results may vary " above, of course we allwant NED. But each response is different, Lorraines took awhile , a yr to get to NED. I think they will find subgroups w/in her2 that respond more strongly to certain chemos, t dm-1 for one. and pert. Look at darlene gants amazing response to pert alone . Another factor may be prior aggr. tx to keep cancer as contained as possible, never giving it abreak , so t dm-1 has smaller target. just want appr for t dm-1 , and full appr for pert , so they can be combined , flex tx schedule , dose , etc. A few pts have stopped t dm-1 and still seem to have a+ after -effect, w/ other combos like herc/tykerb or herc /nav maintaining gains t dm-1 started. maybe pert will also help.
By the way, " blub " in diet recommendations above means fresh blueberries.

[Nancy L]

I believe heavy pretreatment prior to T-DM1 may explain some of these different responses.

[Mandamoo]

Nancy - on reading the Emilia results (I think or it may have been one of the phase two trials) the treatment group were heavily pretreated with a median of 7 prior therapies and still got a significant response. I think that was one reasons for much of the excitement. I guess all of our cancers are subtly different too. I'm keeping on - stable is a good result and I felt good yesterday at only day 4.
I hope you are doing ok Nancy and Angie. xx

[radiant]

Angie!

Thank-you SO much for your message. I'm so glad the swelling is going down for you! I'm better swelling wise on 3rd infusion - and fatigue is bad for me as well! I did not get swelling on Abraxene - but it was a good chemo for me. I did not fail it - just went off after no change.

Anyways, thanks again - fingers crossed this is working for us.

Hugs,

Kim

[waterdreamer]

I will be doing my 25th cycle of TDM-1 next week. My side effects are elevated liver enzymes, low platelets and for some reason, it seems to be causing issues with my lungs. I have inflammation in my lungs. We lowered the dose to 3.0 (only one dose reduction is allowed) and my lungs seem to be holding steady. Originally, I had mets to lungs, brain and bones. The lungs cleared really quickly with taxotere and herceptin, and the bones have been slower to respond. Some times it is hard to tell what is going on with the bones. I have a stable lytic lesion in T2 vertebae, and my first left rib. Otherwise, I am doing really well. Sometimes I have nausea, fatigue and extra long periods, but those are about the main issues. I stay away from all dairy, and I think this helps, but who knows?

[phil]

so good to hear from you ! so glad you are still getting t dm-1 ! Lorraine is 2 years on t dm-1 this week , doing great ! 28 doses , 21 at 3.0. Lorraines exp access allows one more reduction to 2.4. we are trying to avoid that, as we dont know if theres any cancer lurking. even tho ned for a yr now. plats are L.s issue, about every 4th dose she has to wait 4 weeks for plats to make 75,000, which is new limit in her roll-over study. we would like to get an exception for tx every 4 weeks at 3.0 , but havent asked yet. the plat support we have talked about before seems to definitely help - sharks liver oil, kale , red meat etc. why do you avoid dairy ?? Again , so glad your doing well- appr. is coming soon , when it does we hope to tell our story to the Press , the story of how This FDA botched appr of this amazing drug , we think of our friends who never got achance at t dm -1, like Jay, No Respect for Stage IV Survivors Rights !

[michka]

I have had my 11th round of TDM1. The dose was reduced 20% round 10.
I would like to know if others are coping with very very dry eyes. Loss of saliva. Sore throat. Dry nose. (although it is often runny!) Sort of bad acne on the face during a week in the middle of each round. If yes how bad is it and what do you do?
Michka

[Lori R]

Michka,
Yes, yes and yes to the side effects.

Eyes - I mentioned my failing eye site to my Dr. who informed me that the dry eyes were the cause. I went to my opthamolgist who confirmed I have very dry eyes. He gave me eye drops to use twice a day and also a fish oil supplement. (still need to review with my onc) If it persists there is a drug the opthamologist can prescribe but of course I don't want to take that step. The dry eyes are strange as I just can't focus. I have to blink two or three times to read something...even with my glasses on.

Dry mouth - UGH...doesn't this drive you nuts???? I kept thinking I was just thirsty and kept trying to drink more and more. So, I went and bought an over the counter dry mouth rinse called biotene. It is kind of weird, but it has helped to keep in bearable.

Definately sore throat. It just feels so raw. I haven't figured out what to do here. Any suggestions??

Finally the acne...you just explained something. I am day 6 after my treatment and I have what looks like a pimple on the end of my nose!! Lovely. My thoughts immediately jumped to skin cancer....so you post has eliminated my concern. I must go back to my teenage years and come up with creative ways to hide it. Sigh!!!

So we are very much tracking on the side effects. I just hope this is working. More on that later.

I hope some of my suggestions help....I find knowing we are not alone, very comforting.

[michka]

Lori,
For my eyes that also burn they gave me a gel. I have to get up 2 or 3 times during the night to put some in my eyes because they hurt too much.
For the mouth they suggested bicarbonate. It is not a solution for me. It may prevent mouth soars but does not help for he lack of saliva. They also gave me a spray that is better than nothing. I'll look if I can find biotene or something sold here "over the counter".
For the throat, nothing to suggest so I suck unsweetened pills for sore throats when it hurts too much.
For the acne they gave me an antibiotic treatment (pills) although I did not ask for it. They said that if it got worse I would have it handy. I hope it doesn't mean that they know that it is going to be worse....I don't mind being 15 years old again but not that way! It seems to me that nobody except us 2 reported this.

These side effects got worse the last weeks while others are getting much better. How strange. I hope you are doing OK Lori. Any scan coming up?
Michka

[waterdreamer]

I spoke to my doctors and yes, there is one more allowable dose reduction, although, I am not sure it I will get it on trial. I avoid dairy because I have read so many books about how dairy is unhealthy. I also grew up with a family doctor, who said that humans should only drink human milk, not cows milk. It is also unnatural to keep a cow producing milk its entire life. So much, also casein is one of the most carcinogenic natural foods we consume. Read the China Study. Anyway, I am happier to avoid this food type. It also creates inflammation. There are those who believe in drinking raw milk, as it still contains healthy nutrients. But that is not appealing and also comes with its risks.

I am also having issues with my eyes, and it is hard to see things, and focus on things, I never related it to my eyes being dry. Maybe we should drink more than normal. I will keep you updated on any success I have.

I do not have any acne issues, but I do seem to get a sore throat and feel like I have a cold, almost every cycle.

I am interested in what everyones daily diet consists of....
Best wishes
Fern

[Mandamoo]

I don't seem to have the issues mentioned so far. I have had 4 doses and so far it is an initial reaction that lasts a few days - extreme lethargy first day and moderate nausea, headache, second day fluey, mild nausea and headache, fatigue improving, third day improving again but wake with headache and some joint pain - usually relieved by day 4.
Apparently according to the trial onc the TDM1 doesn't hit my good at all - my bloods look like a normal person's! I have noticed a dry mouth for about a week post treatment and my nose feel dry despite running. I also have had some issues with asthma/hay fever type symptoms that we feel is not the cancer in my lungs but allergy - I seem to be much more sensitive.
I've noticed something funny with my tumor markers - never a great indicator for me as I see spread on scans prior to change in markers and usually even then it is within normal limits. I noticed this week that my TM (ca15-3) had doubled since I started the trips (I haven't been getting these regularly) from 22-47 and my CEA has in read from 2.8-7-6.8. They have been stable for the past 6 weeks and my scan 3 and half weeks ago showed stable disease in lungs and reduction in chest nodes. I wondered if it was some sort of flare? Guess next scan will tell.
As for diet I eat a whole food diet, focused on plant based foods and including fish several times a week. I don't eat dairy apart from the occasional indulgence in some goat cheese though I am considering adding a good organic biodynamic yoghurt back in (may make my own soy yoghurt - I feel comfortable with soy) I have a number of juices including at least one - two green juices including spirulina, a lemon juice in water and maybe a carrot and beet root and ginger if I feel like it. I also eat berries and fruit, limit sugar, no coffee or alcohol. I eat eggs a couple of times a week. I believe my diet helps to keep me well going through treatment and am sure it is helping keep my platelets and blood in good shape. I just need it to also help keep the cancer at bay as well. I enjoy my food and am relishing new tastes. I will not feel guilty about indulgences and enjoy them when I make the considered decision to indulge (though I realized on my trip to Italy that my body definitely does not like dairy and had to skip the gelato!) I am listening to my body a lot more. I also exercise regularly - swimming, cycling and walking, have accupuncture regularly, attend a support group and live life to the full.

We are all so different aren't we? I am glad to be coming out of the fog from this treatment. Yippee!

[Pray]

Amanda, I just love your positive attitude! Gods blessings to all of you. Please know you are all in my prayers.

[katymc]

Hi all, thanks for the posts and the positive attitudes. I have had bone mets for 3 1/2 years and have been thru a number of treatments. I found a trial in Fairfax VA and have just had my second treatment. It was interesting to hear about the dry eyes because I thought my problem was due to multiple eye surgeries for retinal detachment some years ago but now it makes sense to me. And the dry mouth - some mornings I can barely speak (my husband probably loves it!) but I have Biotene in my bathroom that I haven't been using. My dentist gave it to me ages ago. It's great to see your posts because I always just get on with whatever symptoms I have and don't really consider trying to "fix" them 'cause I'm used to discomfort from the various treatments I've had. It is so good to "talk" with all of you. Now I am off to put drops in my eyes and Biotene in my mouth! BTW - there is also a Biotene toothpaste - I have that too! Take care my fellow fighters and enjoy this beautiful season. Katy

[phil]

Hi Katy, I am Phil's wife Lorraine and I started TDM-1 in Fairfax 2 years ago. The people are great there. Do you see Bridget , Stacey, and Dr. Robert? If you do please tell them Lorraine from MGH in Boston says "hi and I am still NED!" I have the dry mouth too and Biotene mouthwash and spray both work very well. My best to you, Lorraine

[katymc]

Thanks for the post Lorraine - yes, they are a great bunch! Did you move and have to leave the trial? I forget the names of the nurses I've seen so far but I will tell Dr. Robert that we've "talked". How encouraging to be NED after 2 years. I've often thought that the scariest words in the english language must be "my oncologist" but then we have the most exciting when you're told you're "NED" - that's my hope for me and all of us on this trial. Are you still on TDM1? Have a lovely day and take care of yourself. Katy

[phil]

HI Katy, I was in fairfax for a year because they closed expanded axcess and fairfax was one of 13 sites that still had it opened. I traveled for 14 months to get my treatment. It was well wotth it. Fianlly I was able to come back to Boston in Jan of this year. Stacey and Bridget are the research co ordinators not nurses they were awesome. I believe you are right NED is a wonderful word. God is so good. Lorraine

[Mandamoo]

Bumping this up for 7and counting.

[waterdreamer]

Updating, I just did my 27th round of TDM-1 and I am feeling really good. However, my CEA markers are rising, they are now around 13, so I need to do a scan and figure out if there may be trouble brewing.

[KDR]

My guess is rapid cell die off. I've found fluctation with T-DM1.

You're gonna be good!


Karen

[phil]

So glad you are still on t dm-1 . I agree w/ karen, could be cell die off. Lorrraines markers dropped dramatically w/ start of t dm-1, but bumped up when she had sepsis ( blood infection ). dropped down after sepsis cleared. could it be related to the lung inflammation ? our doc hasnt even done markers in 9 months , since Lorraines eap closed and she went into the extension or rollover study.

[waterdreamer]

I did my 28th round of TDM-1 today at 3.0 as my CT scans are clear. My bones still show damage where the cancer was and if it were not for the bones, I would be NED. I think it is harder to determine with the bones, if you are indeed cancer free. I do not have the results of my latest CEA's. I made a deal with my doctor, that if the CEA's were still rising I would do a brain MRI, but if they were not, then I could hold off on that a little longer.
The other good news is that my platelets went from 100 to 129 in 3 weeks, so I am really happy about that. Also my liver enzymes are returning to normal, with only the AST being elevated at 48 when the range should be 13 - 39. My doc mentioned that the elevated CEA's could be due to some sort of infection that was going on, cancer cells dying or cancer cells growing. I am feeling really good and am so grateful to be on this trial. I cannot wait for it to be approved. For those of you on TDM-1 please share what blood results are flagged and if they change. I also dropped the amount of magnesium/potassium I was taking and got such bad cramps in my toes, I was in agony and couldn't walk. As soon as I bumped the Potassium/Mag mix up, it went away.

[KDR]

Fern
All in all, this sounds like great news! Keep going, dear friend!
You are an inspiration to many-mainly me,
Love
Karen

[Eva Sophia]

I have been on the Marianne study - TDM-1 plus/minus pertuzumab since April 2011 - 22months. I think that puts me at about 30 doses. Overall, I've been very good on it - with no nausea, hair loss at all. The fatigue has become an issue, particularly since month 19. I also developed a blood disorder around month 3. It appeared as a "rash" which has been diagnosed as telangectasias (broken capillary vessels) all over my chest and hands and on my face as well. Also, I bleed very easily, like my blood is thin and doesn't clot well. They ran a whole series of tests that show that I do clot, but just not normally.

Since you asked, here are my abnormal lab results from my last draw on Monday - they have all been very stable throughout.
Hemoglobin 10.3
Hematocrit 31.5
RDW 18.9
%Monocytes 18.2
Albumin 3.8
ALT 82
AST 107

I hope that helps. Would love to hear from others who have bleeding issues or fatigue after a long time on TDM-1.

I have been NED since my very first scan after getting on the drug!

[phil]

my wife Lorraine is doing great on t dm-1 , 26 months, ned over a yr. sounds like you are having low platelets, like her. red rash, bloody noses, etc. she reduced to 3.0 back in 2010. she was in an eap " trial " , now in an extension study . last 3 doses she and others w/ low plats have been granted an "exception " , if her plats are below 75,000 , she can wait a week or two , to get them over 75,000. went 4 weeks, then 5 weeks , then 4 weeks, and plats have risen some already. ( normal is 150,000 + ). we hope to go to every 4 weeks after appr. Lorraine follows a diet of some top quality , bone-in red meat, greens, berries , nuts, pineapple. sharks liver oil , chlorophyll from health food store. 1000mg folic acid. works well with red counts which may give u more energy. works ok w/ plats. when L. gets close to 100,000 plats, those red " rashes ' or capllaries fade some. ask your doc what your plats have been. they clot blood. think about telling your story . PM me to tell it , its a travesty that this drug hasn't been appr. costs so many lives. God Bless , good luck.

[Eva Sophia]

Phil, my platelet count has actually remained normal - it was 195k last check. But when they did the advanced blood work, they found out it wasn't clotting correctly...so while there are a good number of them, they appear damaged / not working right - and so therefore my clotting is compromised.

I'm in the Marianne study so I can only skip so many sessions. Right now, I've been getting treated every other time, which is the minimum to stay in the study. And they just lowered my dose to 3.0.

I heard that I'm the last patient still in the study at my site, so I'm glad to hear there are other with 2+ years on the drug. With the weird side effects with my blood and the fatigue they say they can't explain (because my counts are not very low), it makes me worried that we don't really know what going on with me.

I would be happy to "tell my story" - just not really sure where the best place to do so is.

I would also be happy to learn more about your wife's story.

[phil]

even tho your plats are unusual, the result is similar to Lorraines low plats . your plats are not healthy. glad your team is giving u extra tiem . stage iv's deserve flexibility , esp. if response is so good. i suggest you start a diet similar to what we do, the diet works very well w/ red counts like rbc, hemoglobin, hematocrit. L.'s red counts are higher than yours, normal range. that helps w/ energy. we recommend especially sharks liver oil, 2 tabs a day. red meat , L . doesnt like it , but she can go vegetarian in 2014 !! marinate kale in olive oil, spinach. may help give healthier plats too. e-mail me at pmccartinjr@comcast.net to talk about stories . we are collecting , planning. You and Lorraine are some of avery lucky few , many do not know how lucky they are , This FDA needs to be changed, so others get the chance at new drugs in the future.

[phil]

BTW , your liver enzymes are similar to Lo's. irritation from drug , not to worry about.

[Shaysmom]

Hi All,

So glad to read the side effects . Tdm1 is my 11th chemo. I have ovarian mets, lung nodules, effusion, adrenal mets, large mediastinal lymphnode that compresses my esophagus plus others, lymph node bw stomach and liver, stomach mets and possible colon mets. GI mets have me losing 60 pounds in one year.

I'm about to have my third tdm1 effusion. I'm on Teresa trial since 3/2012 but was on physicians choice arm which was Gemzar and herceptin. That gave me five great months. Then progressed but not 20% so had to stay on Gemzar another six weeks even though every met was larger, six weeks later new mets. But it was 9/2012 and the addendum to allow crossover was not out, in fact univ of PEnn didn't approve it until end Nov.
So I did perjeta, herceptin and taxotere until jan 2013 when I was able to crossover.
CT scan in Dec showed stability. No scans yet on TDM1. I don't scan often. No pet in a year and ct scan every three months except when requires more frequently by trial. Brain scan was year ago. Tumor markers are unreliable have been normal always.

I always get odd side effects. TDM1 for me has caused headaches, severe dry eyes and blurry vision. Sore throat one day after tx, dry mouth and horrible leg cramps and pain in my hips. Blood work is good. Chest heaviness and fatigue.
My body is beat up. I sleep every day I nap, some days I can't get out of bed. Always have two days of the chest heaviness. Scared me this Sat so happy others have it and eye issues bc I need better drops. First cycle they thought it was pink eye but now I know it's not started up right after second tx, they are dry and itch.
Blood work is OK. Echo was fine.
I am almost out of drugs and I want to see my son turn 13 this summer. He has been having anxiety with me and want to get him more support.
How bad were headaches with this . I may ask for brain scan but if its positive I lose TDM1. Wish it was approved so I didn't feel like I was giving up my shot at it. I have about 3 days with bad aches over the 21 days. Not every day. They are diffuse.

Thanks
Kelly

[Sdgirl]

Kelly,
I horrible headaches. I do not know if it is related to tdm1. I do have brain mes and got a scan on Friday. They are still present but the onc does not think mets are causing headaches. The EAP does let you have tx if you get brain mets but the rules are iffy. I understand how you feel. I hope you get relief soon. Good luck

[waterdreamer]

So, I have an update on those rising CEA levels. There was reason to be concerned. I have a 09 x 0.8 x 0.7cm tumor on my left frontal lobe. So I am about to start the whole approval, neurologist visit, radiation (Novalis) experience. I am doing round 29 of TDM-1 tomorrow, so I will update on those rising CEA's.

[KDR]

Fern,
You are still winning...zap those mets Novalis style...speak with you soon, all will be alright,
Love
Karen

[Mandamoo]

Wishing you well with the Novalis!

[waterdreamer]

Novalis is amazing. I am so grateful to have access to it. I am also so fortunate that it is isolated in one spot. I do have horrible headaches from the brain met, but they are intermittent. Thanks for all your support. I am feeling confident that this is the last brain met I am going to have to deal with. My experience, diet is crucial, and we have to stay away from sugars and processed foods. Happy Valentines day everyone. :)

[KDR]

Waterdreamer, you're a dream!


KDM

[waterdreamer]

Karen, thank you for all your support and what kind words - you touched my heart.
Thank you
Fern

PS Here is the link for Novalis for those that are not familiar with it. http://neurosurgery.ucla.edu/body.cfm?id=408

[StephN]

Dear Fern -
Hope the Novalis will be soon. Your CEA behaved just like mine, Christine and a couple others here - indicating brain mets. And it was ONLY the CEA that was moving.

Sorry you have such headaches with that met, but it will all be over soon. Keep dreaming of NED!

[waterdreamer]

Hi Steph,

How quickly after doing the gamma knife for the brain mets, did your CEA levels drop? What are your CEA levels now that you are NED?
Wishing you a lifetime filled with NED! :)

Best wishes
Fern

[waterdreamer]

I have now been on Kadcyla for over 2 years, and my last CT scan was clear (except for the permanent damage to some bones - which means I will never be declared NED) and the brain met which was radiated (Novalis style) in March was nowhere to be seen on my last MRI.
Life is busy, got remarried to the most incredible man, I am raising a 7 and 11 year old and keeping too busy.
I will post soon on my side effects after being on Kadcyla for over 2 years now.
Best wishes in this fight to you all,
Fern

[StephN]

Dear Fern -
Well, getting remarried is one of the more interesting side effects of Kadcyla!

All the best of everything. You asked how soon after my brain mets treatment did my CEA drop back down. It was quite immediate, and I recall Christine had the same effect after her brain mets were treated.