We are 212,229 members in 82 forums discussing 151,831 topics.

Help with Abbreviations

Topic: Palbociclib for elderly patient with ulcerated/fungated tumor

Forum: Stage IV and Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Feb 11, 2018 04:17PM

faheem0 wrote:

Dear People,


This is my second post. I hope I'm following proper protocol for this site. If not, please let me know.


My elderly (82 year old) mother has stage 4 breast cancer, and I have a question. She was prescribed. She has an ulcerating/fungated tumor. There is some bleeding, but not a lot. She was taking letrozole for three months,
which didn't seem to work, at least not enough. She has now been prescribed fulvestrant and Ibrance/palbociclib.


A medical oncologist told me that taking Ibrance/palbociclib is a bad idea if you have an ulcerating/fungated tumor, since it causes neutropenia, which could cause problems with the ulcer.

However, the medical oncologist that initially prescribed it to me, as well as another surgical oncologist, said nothing about this issue. I wrote to them about it, but they haven't replied.

It's also probably relevant that I'm in India. The medical community here is not known for either their competence/reliability or their concern about patients. Therefore I routinely get multiple opinions about major issues, as far as possible.

I'd really appreciate informed opinions about this issue.

Log in to post a reply

Page 1 of 1 (4 results)

Posts 1 - 4 (4 total)

Log in to post a reply

Feb 11, 2018 07:56PM - edited Feb 11, 2018 07:58PM by AussieTracey

Hello I also had a fungatimg tumour on my mastectomy scar. I can understand your concern infection and odour are two common problems with fungating tumours. However I was treated with Ibrance and had no problems. How is your mother caring for the fungating tumour.? I dressed mine daily with Medihoney paste. I found this helped with odour and keeping it clean. My tumour didn't respond to Ibrance but has completely disappeared with Xeloda an oral chemo. I do think Ibrance or any treatment is worth the risk because living with a fungating tumour is horrible. I am younger than your mother though and well other than having cancer. Wishing you and your mother all the best with treatment

Dx 11/7/2007, 5cm, Stage IV, 3/30 nodes, mets, ER+, HER2-
Log in to post a reply

Feb 12, 2018 03:24PM faheem0 wrote:

Hi @AussieTracey,


Thank you very much for your helpful reply. First, to answer your question:


> How is your mother caring for the fungating tumour.?


Actually, it's mostly me caring for it. My mother has dementia, and isn't up to doing much. I'm currently changing the dressing every two days. Sometimes it stretches to 3. I'm wiping it down with an alcohol-based disinfectant called Sterillium. Then applying antibiotic cream, then gauze with micropore tape. This was per the recommendations of the oncologists I've talked to, who mostly don't seem to be paying attention. So I can imagine there are better options
out there. I looked up Medihoney paste, but it doesn't appear to be available here (India), and if available would probably be insanely expensive by Indian standards. Other suggestions are more than welcome.


I have a lot of questions. I hope that is ok and not inappropriate. Like I said, I'm new here. Maybe some of them could be better directed elsewhere. I'm grateful for any direction. I'll put the more specific questions first, and the more general questions below.

SPECIFIC:


1) First, I see that I left out a major part of my original question. That'll teach me to post late at night.


The medical oncologist who told me that taking Ibrance/palbociclib is a bad idea if you have an ulcerating/fungated tumor also told me that she should have a masectomy (called a toilet masectomy) to remove the ulcer. I'd really not do this if not necessary. To the extent that my mother is able to follow what is going on, she doesn't want surgery either. She has dementia. Partly it's just more unpleasantness, plus we're concerned about complications/after effects from surgery. Also, if she is going to go on the medication, I would like as little delay as possible.

2) It's a bit disturbing that you didn't respond to Ibrance, because according to what the oncologist told me, that medication is basically my mother's only shot. Apparently she can't do chemo because of her age. Did you take Ibrance with Letrozole or with Fulvestrant? From what I've read, Ibrance isn't taken by itself. And how long did you
take it for?


3) If I understand correctly, you got a fungating tumor after getting a masectomy? Yikes. But I suppose there is no reason a tumor cannot break through the skin even after a masectomy. Is that what happened?Cancer is super scary.


GENERAL


1) Aside for this forum, are there any other recommended breast cancer forums in English on the net? I also found a breastcancercare.org.uk. I haven't posted there yet.


2) I see you have


Dx 11/7/2007, 5cm, Stage IV, 3/30 nodes, mets, ER+, HER2-


at the bottom of your message. Is this automatically added from the profile? Should I add something like this to my profile, even though I'm not actually the one who has the illness?


3) How can I make sure the maximum number of people see my message? I posted it in one particular place on the forum. How about people who aren't looking at that place?


Regards, Faheem

Log in to post a reply

Feb 14, 2018 03:28AM AussieTracey wrote:

Faheem your Mum may respond very well to Ibrance. I have had mets for 10 years so I am heavily pretreated and because of that I didn’t get as longas predicted from the trials. I not sure what is available in India but if your Mum is on Ibrance with letrazole she could do faslodex on it’s own after Ibrance. There is also Afinitor and Aromasin as well as Xeloda which is an oral chemo. So lots of options. Your wound treatment of the fungating tumour sounds good. Considering your mum’s dementia I can understand your reluctance to pursue a mastectomy . Yes my fungating tumour occurred after my mastectomy but 20 years later. The other option I looked into was radiotherapy to the fungating tumour. The problem for me was I had previously had rads to this area which wouldn’t be a problem for your Mum.

There are a number of Facebook groups for Advanced Breast Cancer

Dx 11/7/2007, 5cm, Stage IV, 3/30 nodes, mets, ER+, HER2-
Log in to post a reply

Feb 16, 2018 05:20PM faheem0 wrote:

Hi AussieTracey,


Thank you very much for your kind reply. Apologies in advance for the following babbling. It's basically a brain dump.


First, here are some questions.

1) Did your medical oncologist say anything about taking Ibrance with a fungating tumor?


2) Is the purpose of radiotherapy to the fungating tumour only to reduce or eliminate the fungating?


3) And do you have any specific pointers to Breast Cancer forums on Facebook?


If you have been dealing with breast cancer for 20 years, that sounds horrifying beyond imagining. I've only been dealing with it for 6 months, and would quite like to stop. Strangely, I've found that watching episodes of the TV show "Shrubs", in its idiosyncratic reflections of life and death, has a calming effect.

To be clear, initially my mother was taking just letrazole by itself, not with Ibrance. Which didn't seem to be doing much to stop the spread. Now the plan per the medical oncologist Maniar is now to switch to fulvestrant + Ibrance. All the oncologists I've talked to have said that Chemo isn't an option for my mother, because of her
age.


A major problem is that I haven't found an oncologist that I feel comfortable with. None of them give the impression they give a crap. And their competence seems questionable. For one thing, they often contradict each other, and none of them seem able or willing to provide references. Admittedly, I haven't cross-examined them on the point. Also, when I send them emails with questions, they routinely ignore them.

We met with a surgeon (Dalal) on Tuesday 13th February - he wasn't very pleasant. He thought it was ok to proceed with surgery. He was alarmingly casual about the surgery. And he thought that it was ok to go with just the fulvestrant for now, and delay the Ibrance for a month and a half. He was alarmingly casual about that too. From what I've heard, fulvestrant + Ibrance either works very well, or doesn't work at all. I guess it would be a good idea to find out which asap. I don't really want to delay this any more than necessary, certainly not 1 1/2 months.

As regards the major issue of having a masectomy before using Ibrance, I'm leaning heavily towards just going ahead with the fulvestrant + Ibrance. The medical oncologist (Basade) said that there could be problems with the Ibrance if the ulceration wasn't resolved, but I haven't found anything online to support this. And two people, yourself and Chicagoan (see her post on https://community.breastcancer.org/forum/8/topics/...) thought proceeding with Ibrance if one had a ulcerated wound was reasonable. Also, I found a somewhat relevant thread, https://community.breastcancer.org/forum/72/topics... about people with open wounds being treated with chemo.

And more generally, there does not seem to be a concensus about the advisability of having a masectomy if one has stage 4 breast cancer. Clinical trials don't seem to be conclusive. And I've heard that one the one hand it's good to get rid of a big tumor mass in the body. On the other hand, apparently the surgery can promote growth in
distant metastatic tumors. See for example https://www.guelphmercury.com/living-story/4267002... and https://academic.oup.com/annonc/article/19/11/1821...

Also, one of the surgeons (Sankit Mehta) I consulted with said that in my mother's case, she has "heavy infection" of the lymph nodes, and if the lymph nodes were removed, there would be heavy drainage, the surgical wound would take a long time to heal, and perhaps not heal at all. Of course I don't know if this is likely, but it certainly gives
me pause.

Page 1 of 1 (4 results)