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.