TDM1 breathing/fatigue question

[michka]

Hello to all. I have been hesitating to ask because I don't want to complain but I am the kind who needs to know what is going on in my body even if it doesn't change anything. Here is my question related to TDM1 side effects:
I had 3 treatments. At each treatment, starting at the end of week 1, I feel tired (not tired as I was with FEC or Taxol or other treatments, I mean exhausted), but worse I am very limited. I cannot take a shower or move around without being breathless and having pain in my thorax. The only way to prevent that is to stay in bed. It gets better the last days of the third week. I asked the onc who said they did not know what it was. The heart was checked and is OK. My blood counts are OK. They said the tumors in my lungs are small and would not generate that. They had just seen the scan and there was nothing else to report than the tumors in the lung area. I read on the list of possible side effects"dyspnea, pain in the thorax". Is that it? I did not see anybody really report this on our forum although I read fatigue and once pain in the thorax. Did this happen to you? Do you know where it comes from? Any advice?
I have so many things I feel like doing, start and have to abandon, even in the house.
Michka

[Vicky]

Hi Michka,

I had 16 rounds of tdm1 and did land in the er with the sensation of an "elephant" sitting on my chest after round 12 or 13. I too had a complete work up and we ruled out both heart and lungs. The only thing that helped somewhat, was taking a proton pump inhibitor each morning. Somehow for me, part of the effect was relieved when my acid reflux was better controlled, but it did not entirely resolve while on the drug.

I hope this helps! I hope Tdm1 proves effective for you- it was for me!

[Barbara H.]

Hi Michka,
You may wish to look at my prior posts. I started the T-DM1 trial in 2007 and eventually had to stop due to lung inflammation. It does not appear as if you have that, but I would check it out. It is a very rare side effect.
Best,
Barbara H.

[KDR]

Hello dear Michka,
What is your dosing? I take 2.4mg/kg weekly. It's more than the usual three week dose, I have heard from others. I am still learning about the drug, and having conversations with my onco nurses about others and how they've seen it operate lead me to believe that the fatigue is a very common side effect. I haven't had any breathing issues, but I do have sore muscles. For instance, if I have to get something from the backseat of the car from the front or try pulling a boot off my foot I can get cramping. Nurses told me that is the T-DM1. I also have neuropathy from it. I've been on six months, have had scans every six weeks, so far, so good.
Wednesday I go in again for PET/CT and, as usual, am worried that the shoe will drop, but am doing my best to keep busy and remember what Dad said, "You're gonna be good."
Karen

[chrisy]

I had a lot of fatigue the day of infusion, and then achy, low fever about three days later. I did not have any breathing issues, so no suggestions or input there.

[hutchibk]

I am on day 4 after treatment with TDM1 and am fatigued but that's all. I can expect a little bloody nose in coming days, and some low platelets, but that is about all. My CBC numbers were good until this spring when my hemoglobin went down to 7.4, (I felt kinda like you have described), and for the first time ever I had a blood transfusion. It definitely helped, alot. (normal for HGB is 12). So even at 8, 9, 10 or in between can make you tired. I hover just over 10 usually on TDM1.

[michka]

Well, I don't know what to think. For me this "syndrome" is linked to TDM1 infusions since it comes at each cycle and then gets better until I get another infusion. As nobody reports what I feel it may be that something else is underlying and that TDM1 just makes it come out more. I don't like to be an exception.
I feel I am a detective eliminating different options to find the criminal :-)
Vicky I tried taking a proton pump inhibitor to see but it did not help.
The pain I feel in the thorax is not like a crush it is more like when you run too much or having a very low level of hemoglobin and taking a hot shower.
Hutchbick, my hemoglobin is over 12, so that's out. (but good!)
Barbara wouldn't a lung inflammation show on a scan? How did you find out you had that?
Chrisy, thank you for answering that you didn't have that side effect because you had TDM1 a long time and it is important to know that
Karen, I get a 3,6 mg/kg dose every three weeks. This is interesting although another subject: you get much much more TDM1 than me. The double in fact on a three week period. What should we think about that?
Is it better?
I have other side effects like pains and nausea and bad neuropathy (a souvenir from Taxol that gets worse with chemo) but I know how to handle that. On the first infusion I had abnormal pain in the abdomen all over but it did not come back.

Karen I will wait for your Pet/results hoping all is fine. I cannot imagine your shoe dropping off. Look at that nice princess picture! You have resisted Taxol with TDM1 and Pertuzumab. That must have been difficult. Your results give hope to all of us.

I am having my 4th infusion next week. I will report my problem again and continue my investigation...
Michka-Scherlock

[KDR]

Hi, Michka,
Part of my trial is to find out the answer to your question: Is it better?
You are very smart: Taxol with T-DM1 was so grueling. We can PM about it.
Fatigue is a common side effect, and the "pain" you feel may be intense muscle aches, or the T-DM1 working.
For the last two weeks, I've just been feeling weird about the whole situation. BC in general. I'll get over it. Scans Wednesday, as you know. As always, Michka, you put a smile on my face.

Love
Karen

[hutchibk]

On TDM1, (I have been on 1.5 yrs), my current weight has everything to do with my dose, too.

[Barbara H.]

Hi Michka,
My CT scans showed something that looked like ground glass in the lower section of my lungs. I had a biopsy that indicated inflammation. I then took high doses of steroids that helped but didn't allow me to sleep. Finally, I had to go off the trial. I was on a very early weekly trial that I stated in Sept. 2007 with a dose that was over all higher than the dose that one now receives every 3 weeks. TDM-1 put me into full remission and Herceptin/Tykerb is keeping there. I only had a fever and felt achy with my first infusion of TDM-1. After that, I had high levels that were tested for the liver and lower levels for the blood. As a result, I had to occasionally skip treatment. At this point everything they test for is normal. My biggest complaint of TDM-1 was that I had terrible nosebleeds with huge clots. They were annoying because I am a teacher.
I will be happy when TDM-1 becomes approved because it could be an option again if I need it as long as I am closely monitored.
Best,
Barbara H.

[hutchibk]

Nosebleeds too with large clots. Glad I'm not the only one... yesterday seemed it would never stop, I ended up using an ice pack and that did the trick!

[KDR]

+For this trial, I am weighed every three weeks, and this is how they calculate dose. (Same to other chemos). I am under 150 lbs/68kg. The 2.4mg/kg dosing is nearly three times the usual dosing of any other T-DM1 trial. One goal of the trial is to determine whether it is best to treat weekly or every three weeks. I also have nosebleeds as described above.

Karen

[schoolteacher]

Michka, hope your treatment goes well this week.

Amelia

[ango]

I just started on TDM1 on this past Tuesday. I have the same symptoms you are having Michka. My thorax feels very irritated, almost a burning sensation. I did have some shortness of breath before this but feel it a lot more after Tuesday. The whole Elephant on the chest thing. It's much worse at night when I am laying down. My poor lungs are pretty saturated with mets now so I don't know if this is just how they should feel or if it is a side effect. I am feeling some relief as the days go on though. Hope yours is feeling better too.

Angie

[Pray]

Angie, welcome to the board! Looks like you have a funny little dumpling on your hands helping you on your way. Gods blessings to you and your family. Peace my friend