TDM-1 side effects
 

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

Re: TDM-1 side effects
 

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/sho...t=T-DM1+effect

http://her2support.org/vbulletin/sho...nce#post248948

Re: TDM-1 side effects
 

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?

Re: TDM-1 side effects
 

Hi Karen,
This is the clinical trial which I am on.
http://clinicaltrials.gov/ct2/show/N...m=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

Re: TDM-1 side effects
 

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

Re: TDM-1 side effects
 

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.

Re: TDM-1 side effects
 

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!

Re: TDM-1 side effects
 

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!

Re: TDM-1 side effects
 

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

Re: TDM-1 side effects
 

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.

Re: TDM-1 side effects
 

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!

Re: TDM-1 side effects
 

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.

Re: TDM-1 side effects
 

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.

Re: TDM-1 side effects
 

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.

Re: TDM-1 side effects
 

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

Re: TDM-1 side effects
 

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.

Re: TDM-1 side effects
 

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.

Re: TDM-1 side effects
 

Hope you get some good news soon.

Re: TDM-1 side effects
 

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

Ellie

Re: TDM-1 side effects
 

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 :)

Re: TDM-1 side effects
 

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.

Re: TDM-1 side effects
 

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.

Re: TDM-1 side effects
 

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 :)

Re: TDM-1 side effects
 

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.

Re: TDM-1 side effects
 

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

Laurie :)

Re: TDM-1 side effects
 

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!

Re: TDM-1 side effects
 

Thanks Vicki

Re: TDM-1 side effects
 

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.

Re: TDM-1 side effects
 

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

Re: TDM-1 side effects
 

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

Re: TDM-1 side effects
 

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.

Re: TDM-1 side effects
 

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

Re: TDM-1 side effects
 

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

Re: TDM-1 side effects
 

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

Re: TDM-1 side effects
 

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.

Re: TDM-1 side effects
 

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

Re: TDM-1 side effects
 

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.

Re: TDM-1 side effects
 

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_ _.

Re: TDM-1 side effects
 

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

Re: TDM-1 side effects
 

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.