mom wants to quit

KG1993 · 03-01-2012, 04:32 PM

My mom was dx aug 2011 with stage 4 bc mets to spine and liver. She took 6 rounds of taxotrene/carboplatin (sp)? + herceptin ev 3 weeks and zometa ev 3 weeks.

She has been doing just zometa and herceptin since jan 2012. She still has diahrrea or constipation all the time. SHe says she has no energy. Flu like symptoms most of the time.

Today she mentioned quitting her herceptin. I am ready to go ballistic (which I know not my body). Her last pet scan in dec showed NED liver. Bone mets are non measurable according to her doc.

She is very sensitive to medications. She also has crohnes disease.

My question to you is DO YOU ALSO HAVE ANY OF THESE SYMPTOMS WITH HERCEPTIN?

I know it is an individual thing, but first she blamed the chemo for making her feel bad, then it was the pain meds for her back mets, now it is herceptin. I know she is depressed as well, but anti-depressants do not work for her (even the newer ones).

ugh.
please help.

karen z · 03-01-2012, 04:48 PM

Most of us probably consider or considered Herceptin very easy compared to various combinations of chemo or chemo and Herceptin. Many of us have not had major symptoms to Herceptin per se (but I know individuals who have had complaints will chime in). I wonder if there is a cancer wellness center at your mom's treatment center. It seems like your mom might benefit greatly from talking to a counselor who specializes in cancer and it might be the case that your mom has given up on various anti-depressants (or perhaps therapy) without giving them a chance. Often cancer wellness centers have support groups that can be joined, programs related to nutrition and exercise and a LOT of support. Most cancer wellness centers will take patients from other hospitals- that is, they are simply open to cancer patients or survivors. Many of us found it very helpful to have the support of other patients- but these are just thoughts.

NanaJoni · 03-01-2012, 05:03 PM

KG - Karen's suggestion for counseling and some wellness support is a very good idea for your mom. In addition and related to her physical side effects, especially the diarrhea, it's something I've been dealing with for the last year and a half, even after stopping Herceptin. I finally was referred to a gastroenterologist who put me on a slow releasing steroid called Entocort (generic is budosenide). It works in the lower intestines and is used for many gastro problems including Crohn's. It's very expensive but my ins does help some - combined with lomotil on my worst days and some dietary adjustments, it controls things well. Without I'm constantly subject to embarassing and debilitating diarrhea. Before we got a handle on this, my mental and emotional status was very low. She is blessed to have a caring daughter like you. Keep trying - wishing you some better times.

ElaineM · 03-01-2012, 08:50 PM

Get help from the doctor or nurse practioner for the symptoms. Medical professionals have alot of different solutions. It is just a matter of finding the one that works for your Mom. Maybe seeing a nutritionist or dietician might also help take care of some of the symptoms while not irritating the crohnes disease. See if she is willing to join a support group where she can share with other people having similiar symptoms.
All the best to you both.

Mtngrl · 03-02-2012, 02:45 PM

I think it would be very difficult to feel sick all the time. I'm sure that's depressing. But I don't blame you for freaking out about your mom giving up on cancer treatment that seems to be helping her.

Is she getting any exercise? Does she have social support such as church, book club, cancer support group, etc.?

The idea of seeing a psychiatrist who specializes in cancer issues is an excellent one. I recently hit a patch of depression that lifted on its own pretty quickly, but I definitely would have taken advantage of that if it hadn't.

I hope you are able to help her resolve these issues. She's lucky to have you.

kstrahm · 03-24-2012, 09:15 AM

I have been taking Herceptin for 6 years and am also thinking about stopping. However as your mom has not been on it as long your doc may be reluctant to stop. The Herceptin can be given at different intervals - when I was doing it every 3 weeks I felt much worse than doing it weekly - when doing it every 3 weeks you get a larger dose all at once - when doing it weekly you get a smaller dose each week which for me has been more tolerable. When doing the three week schedule I could not hardly get out of bed for the first two weeks - the weekly has been doable for me but lately the side effects have been coming on strong so I will talk to my doc about a temporary break from it and maybe it is something I can start back up later and just need a break from. I would also agree that there are many medications out there to treat side effects that might help and also talking to someone about it might help. Good luck and let us know how it comes out.
Hugs

KG1993 · 03-26-2012, 05:59 PM

kstrahm,
that is an interesting thought to have her injections weekly. hmmm i will share that with her. things have gotten better lately. still fighting the mets pain in the bones. trying to figure out what to do about her cmpressed fracture in the thoracic region. she went to have kphypolasty infusion, but then they realized her bones too close together (or think they are) so orthopedic doc looking for other options as we speak.
thanks!

KsGal · 03-27-2012, 11:42 PM

Well, I am on the same chemotherapy your mom took, and looking forward to doing just the herceptin in another few treatments. I don't really have any side effects from the herceptin alone, which I took for a while when on a chemo break from an infection. The pain meds, however, did give me constipation. I sure would talk to the nurse or doctor about switching to herceptin at a lower dose every week, and also maybe a change up on any pain meds or whatever might help her symptoms. I am sure that if they know her side effects are bothering her so much she is thinking about going off the Herceptin, they will continue to work on getting a regimen together that is more doable for her. I hope things continue to get better..lots of prayers and positive energy to you both.

schoolteacher · 03-28-2012, 06:19 AM

I hope you mom is feeling better.

The chemo your mom took takes a while to get over. It took me several months to regain my strength after taking these two chemos.

Amelia

norkdo · 07-01-2012, 04:28 AM

Hi. Just wanted an update on how your poor mom is doing. Tell her I feel her pain and I pray she keeps up the Herceptin. It isn't a popular thing for me to say, but I gotta say that many patients need to be reminded they own their lives and are free to choose what they personally need or want. I think if you announce that to your mom like a gift, ya know, just telling her that she and her wants and needs are first with you, and that you'll go along with whatever she chooses, then she might feel less the need to announce stuff like that, like the quitting. If she feels she is first, it is such a gift for her. Herceptin usually has few side effects. I am on it and I truly don't have any side effects from it. Maybe she is testing you to see if she has permission to forego the next round of chemo, for instance? I would be very upset if I decided to forego chemo next time, to have loved ones thinking I am being stupid or wrong headed for choosing that. I know you don't feel that about your mom, but we really need desperately not to be written off by loved ones depending on our decisions, especially as we get near the end of our lives.