Trouble swallowing while on TDM1

belle · 06-05-2011, 03:11 PM

My mom has been on TDM1 since end of February after progression on Herceptin that followed Taxol+Herceptin. Her bc is HER2 pos, mets to lungs, bones and lymphnodes (supraclavicular, on the neck, axilla).

We don't know if it is a side effect or the lymphnode mets on her sternum are pressing her esophagus, but she has been having trouble swallowing all the time since the treatment began. It has gotten worse lately. Even cream soup, jogurt or water go through very hard. Also excessive salivation, thick like a glue.

Doctors kept saying it must be mets in lymphnodes pressing the esophagus or side effects, wanted to wait and see. But when it's gotten worse we asked if it could be GERD. At our last visit the doctor clarified more symptoms and prescribed Pantroprazol. She said if it doesn't get better, we need to come to the emergency room, so that they can do more checkups, possibly endoscopy.

We took the Pantroprazol for more than a week, salivation got less, but swallowing is still not good. Mom sais it feels like there is a small hole left for swallowing behind the sternum area where the enlarged lymphnodes are.

Mom is more tired than before, lost a lot of weight - because of not eating or the treatment is not working, we don't know... We are going to the doctor this week.

Anyone had an experience with trouble swallowing while taking TDM1? I would appreciate your input.

Hugs,
belle

chrisy · 06-05-2011, 04:12 PM

Hi
That is one problem I have not had in tdm1, and frankly that's a new one I've not hears of before. I know that may not be a very helpful answer and of course ALL the potential side effects are not yet known. Still, I'm inclined to think that since your mom has known issues with lymph enlargement in the area that it is related to that ratherthan the tdm1.

You are right to get it checked out thoroughly

Hope she can get it resolved soon.

oregon · 06-05-2011, 06:17 PM

Hi Belle,

I had difficulty with swallowing while Taxotere, so I thought. However we found out is was really my throat closing up on me and found out this is not uncommon, an anaphylactic reaction. I described it as I felt like my supplements were getting stuck in my throat. Often times the oncologists will up the steroids to try and stop the reaction. However, sometimes one's body just can handle certain chemos. I would suggest you check with the doctor to make sure it's not her throat closing versus a swallowing issues. My allergy doctor said this can be a serious reaction and not ignore it. I wish you the best.

belle · 06-06-2011, 01:55 PM

Hi Chrisy and Oregon,

Thanks a lot for your advices. We have been to the doctor today. She said we need to wait and see if the next infusions will shrink her enlarged lymphnodes more and mom may eventually can eat better. The first two CT scans have shown stable so far.

In the agreement we signed for the trial, it is written that narrowing of the throat is one of the rare complicating side effects of TDM1. That's why we were also worried that it may need attention.

Our next infusion is on Thursday and we hope things get better.

My best wishes to you, too,
belle

Sheila · 06-07-2011, 05:17 AM

Belle
Just wondering if she possibly has strictures or narrowing of the esophagus....it is not real common, but simple dilation of the esophagus can relieve it....the procedure may need to be repeated. Do the CT scans show the nodes pressing on that area? Hoping she will overcome this so she can stay on the TDM-1, but if she has to go off it due to side effects, Halaven might do the trick...several of us have had remarkable results with this new chemo.

belle · 06-10-2011, 03:33 PM

Sheila,

Thank you so much for the good tips. I'm afraid it really may be a stricture of the esophagus. Mom practically stopped eating:-( She received her recent infusion on Thursday. The doctor said she looks better (no more constant coughing and asthma-like shortness of breath while speaking are gone) and Pantroprazol should relieve the symptoms. If it doesn't get better this week we will talk to them about the esophagus dilation.

Our next CT scan is in 3 weeks. Halaven sounds great, we'll keep it in mind.

Thank you once again for the useful info.

Kind regards,
belle