6-9 months to live?

semwisdom
  • By semwisdom · January 30, 2013 at 2:51 pm · 36 replies
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My MIL has a stage IV triple negative breast cancer and yesterday the doctor told us that he expects she has 6-9 months to go, unless we find a chemo that is able to slow the growth of her cancer.
She was on Xeloda (unsuccessful as her cancer kept growing and expanding), we are trying Carboplatin as of this week to see if it'll show better results. Then again, per our doc, she's lucky if she gets another 2 years, even if we find a chemo that slows this monster down.
How do you deal with something like this? She's feeling okay and does not accept her diagnosis. We remain hopeful, but is it time for a reality check? Should we be talking to her about her wishes if her health deteriorates quickly? Any other advice you have for us all?

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36 replies   

langley10101

If there is a way to have chemosensitivity done, I would go for it. Rational therapeutics in California does this. It means having a tumor large enough to be biopsied 1x1cm and cooperation of surgeion to have it sent as a 'live sample'. Contact RT for very specific instructions. This will give her the best chance at blasting this cancer with one hard blow. If they cannot get a tumor sample there is a lab in Greece you can send her blood to for chemosensitivity testing. I did this and I am NED (no evidence of disease for now). Neither are cheap 3-4 thousand dollars. Best money I ever spent. Talk to a naturopath about the test. Cancer changes its 'profile' so even if she may have done this before, she should do it again so she isn't playing a roulette game with chemos. Many oncs won't look at the results, but I would posture that the onc would have to at least cooperate on this given that he's given her such a dismal prognosis!
All the best there are many ladies and gents on here who will be able to support and give advice
Lisa

semwisdom

Thanks, Lisa! We've discussed chemosensitivity testing and it is something our onc is willing to explore with us further. They have done this before (about a year ago) but, per our doc, triple negative is challenging because different tumors will have different reaction to drugs, so it's hard to find a fit-all.
We are still in a shock on the prognosis. I just can't get over it. MIL does not know this and we've decided not to share.

serenity58

Hi
I have a similar diagnosis and an aggressive cancer. I want to live as long as possible for my children but I have also accepted my possible death. So my Will is secure, guardians for the children are in place, a support team is activated and funeral spoken of briefly. Last week I was feeling powerless and pretty awful but now I am going to Budwig centre in Spain to see what might be able to help boost my immune system and get my body in a good place to overcome the cancer for as long as possible. It feels really good doing something for myself instead of feeling like I am heading down a long dark tunnel of helplessness. Your MIL needs to do everything she loves and follow her heart and forget about Dr's predictions of longevity. People do survive much longer than expected with a good quality of life and often, in the process, come to terms with the inevitability and sacredness of death (for all of us and who knows when?) This in itself is a gift. Blessings to you all. It is not an easy journey but it is rich.

PS I discuss everything with my children (13 and 20) and they have become amazingly resilient and appreciative of my honesty with them

phil9279

there is a new tumor testing co in Boston, Foundation Medicine. article about them in Boston Globe about 2 weeks ago. PM momx4tnbc on this site to ask about avastin/taxol. PM fragilistic about her trial. God Blesss, Good Luck.

Cathyy424

Just want to say keeping you all in my prayers.And as I will always say we can never give up HOPE!!!!

Lisa58

Well, we are driving down to FL tomorrow for my MIL. She is HER + but the treatment with hormones has not been successful. Her breast cancer has invaded her bone marrow and they want to do chemo. Her Dr appointment is Friday and we will find out a prognisis (hopefully) to figure out if chemo will enhance survival and not impact her QOL. You ask how do we deal with it....hmmm really good question. My MIL is leaning toward the chemo. Her blood levels are low and I am hoping they give her a transfusion prior to the chemo. Her onc says a transfusion is a "last resort". Not sure what that is about but her RBC, hemoglobin, hemocrit and WBC are very low. We are trying to figure out if the chemo will be worse for her QOL. She so wants to go and see her daughter at the end of February and the chemo may reduce her WBC and make her prone to infection. It is all so frustrating and I am really concerned that if she takes the chemo her blood levels and will plummet and she will not be able to do the things she wants to do. It hurts and it sure would be great if Drs. were honest and let you know what the expectations are. All my research says it will do more harm than good at this point but I am not a doctor. It would break my heart if she couldn't make it down to see her daughter. Sorry this is so long....just kinda venting I guess.

Cancersucksnowwhat

July 2011 I was told that without treatment I had six months to live as well.

I wasn't even sick. I went into the hospital to get testing completed as my sister was tested positive for DCIS.
I "knew" I would be fine but since its my sister and we share the same parents, you never know.
So, I go to get the mammogram .......and didn't even get to that part when an incredibly bright and knowledgable nurse said, "what is that red mark?" I never noticed it, the size of half a pencil eraser top. It wasn't raised and my breasts weren't swollen. The next thing I know a routine mammogram turned into a day with test after test and two days later it was confirmed that I had cancer and two days after that i was told it was stage 4 Inflammatory Breast Cancer with mets to my liver. The entire time is still fresh in my mind because my entire family, Mom, brother, sister and fiancé was in the room for the diagnosis. When the Dr said without treatment ill be gone in 6 months as this is a fast moving, very aggressive cancer, I had no choice. I started getting chemo that day.
Chemotherapy, radiation, full mastectomy then with Tamoxifen daily and Herceptian (her +), every 3 weeks, I was told Dec11th, 2012, that I'm NED.
Stage 4 with 6 months to NED. It is my little miricale that I hope continues on forever.
Just remember, nobody has an expiration date stamped on their foot.
Your MIL is very lucky to have you take care of her.

plamont

so good to hear ! my Oncologist has given me 6 months too - I just got diagnosed with Stage IV breast cancer with mets to liver - on December 31/12 - not very good new year's for me! Im in Florida right now enjoying myself - but my oncologist is soooo negative - I will be looking for a new one when I get back - she even said I could miss my next Taxol treatment and take 2 weeks in Florida to enjoy myself - I told her no way - I'm coming back for the treatment - I'm fighting this full force - I don't accept 6 mnths either - but I question her therapy of me - even the nurse at the last chemo treatment said the oncologist is wrong to give me such a poor prognosis - did you change Oncologist??? or keep the same one - I don't have much faith in mine - she is just doom and gloom - I wonder if Taxol is even the right treatment - I'm trying to get on therasphere for the liver mets - hoping to be accepted in 3 months - but I am wondering if this chemo is working??? lost my hair - do feel better - less pain in the back - blood count up - I am now taking neupogen to keep wb count up - got to keep strong! What are your thoughts??? I wasn't crazy about taking neupogen - but don't want to miss any more treatments - as I have missed 2 from low wb counts

semwisdom

Thanks for all the responses and stories! We just switched oncologists and the fact that three doctors in a row are giving us such a poor prognosis is alarming. That said, the current doc is not negative; but he is painfully down-to-earth. My MIL is about to finish her first week of chemo (carboplatin). She did tamoxifen before and then Xeloda (Xeloda was a failure for us). We should know in about 3-4 weeks whether carboplatin is doing anything. If not, we'll re-evaluate our options once again.

Low blood counts is a concern for us too - esp on carboplatin, which is known to dramatically drop white cell counts. She's been getting a shot to keep the WBCs in line.

We are hopeful and hoping for the best, but at the same time, my husband and I are trying to figure out what to do with it all. I don't think my MIL is ready to talk about it yet, so we are giving her some space. In the meantime, trying to decide whether we should be talking to our kids about this. Our older son is almost 8. Big enough, you think? He's very close with his grandma and I can't get over the fact that she might not be around to see him grow. He probably suspects something and we did tell him over a year ago that grandma was very sick but fighting it well.

langley10101

I wonder if neupogen to bring up her wbc count is something she could try while she travels? Ask her onc about this possibility maybe?

Lisa58

@ semwisdom
What shot are they giving your MIL for WBC? That has not been discussed yet and it there is something that will stabilize my MIL WBC it may be the thing to do.

Lrk04

First of all, I am very sorry to hear about your MIL, also, cut out all sugar as these feed tumor growth like nothing else. I would also book a family cruise when she is stable enough, these leave out of Fla, New Jersey, Balto. Food is included and so is entertainment. You will want her to have something amazing to think about in the coming weeks, months and hopefully years ahead. Let's start w/this for now. It is a lot to take in.

Lrk04

Get her on the SS disability fast trak so she will not have to deal w/that later and while she is still feeling weel enough to deal w/it. This $ can help w/extras...or even just necessitites!

Snickersthebeagle

Hi
I also have TNBC, stage IV, dx mets to liver and lungs, given 4-5 months to live (this was back in June 2012) IF we did not get the cancer under control. I went on carbo/gemzar and within 2 months, NED to lungs and 4 months NED in lungs and liver. I am still NED and am just taking gemzar as my oncologist wants to save carbo for later on. I am on a "maintenance" gemzar program....meaning light dosage, 2 weeks on, 1 week off.
I am HOPEFUL that I will live for a few more years, but only God knows.
I did get my liver tumor biopsied and discovered I was 15% ER+ so I am on daily Tamoxifen pills.
Never give up hope! It is one of the most blessed things God gave us!

semwisdom

So, an update here: we are done with the first round of carboplatin. Next appointment is Feb 15. The doc is telling us he'll know by then if carboplatin is worth continuing.

Will look into social security disability: never thought of that. We've also considered traveling: my MIL was not born in the States and I know she'd love to go back home. So maybe we'll start there once we figure out what's ahead. We've also thought about a cruise. Since we all live in Seattle, we've been thinking about a cruise to Alaska.

I'll ask about her shot for WBC. Not sure what she's getting but it appears to be working decently well for her. Stay tuned and thank you all!

Marciainnj (Inactive)
  • By Marciainnj (Inactive)
  • Reply 3763666
  • February 1, 2013 at 2:15 pm
  • Report post

There's another thread on this site about premature life insurance withdrawals. You can do it if you're judged to be terminal by a doc, which sounds like it's the case for your MIL.

Mentioning this because from what I've seen here, the wait for social security benefits is variable. If your MIL has a good life insurance policy, that may be worth looking into.

Lisa58

This thread has been incredibly helpful. We met with the onc today and my MIL is going to get a transfusion (2 units) and then get the chemo after she returns from her visit with her daughter. The bad news is that she has a tumor in her breast (that never was there before). The onc said she wasn't giving her breast exams as the initial tumor was diffused and never displayed. So now we have a tumor and bone marrow. I sure hope the transfusion is helpful for her everyday living. Thanks SO much for all your insight. HUGS!

Lrk04
  • By Lrk04
  • Reply 3764851 · In reply to 3763542 by semwisdom
  • February 1, 2013 at 9:12 pm
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Hello,

when you have the energy reserves get on the social security, they are EXTREMELY nice to Stage IV breast cancer patients!

Wow, you live in Seattle, I cannot stress enough to take a cruise, I used to be a cruise director in Hawaii. The reasons I say this are" There are a plethora of things to do, people can take turns doing things w/mom. There is something else to talk about other than the obvious. sitting out on a deck chair watching the ocean is very calming. You will have a lot of memories and can talk about these long after the cruise is over and everything is not as "nice" as it is now, everything is there, if your mum does not feel like leaving the room, so be it, room service is included. There is a dr on bd, take out the health ins tho, very cheap.
Have a great time and send us some pics!

I will live vicariously thru you!

Lisa

timarief

Just as an FYI... If you do decide to take a cruise don't get the cruise insurance. Any pre-existing condition that flares up does not count as an out... in other words you can not get your money back if you need to cancel the cruise because your cancer acts up. [I asked very specifically.] I am going on my second cruise since my diagnosis in two weeks and can't wait to go... but you are always taking a chance if the cancer acts up. I just pray a lot and plan vacations anyway.

Also, if you are looking into Social Security Disability, please search this site for info. I went on the SS website and provided some complete info on what it takes to qualify. Here is some of the info in a nutshell: Stage 4 cancer is a given to qualify... but you must have worked basically full time and paid into SS for 5 of the last 10 years also to qualify. You must stop working to qualify... and you don't receive any money for the first 5 months after you are considered to be qualified. After you do get qualified, you will then also qualify for Medicare 2 years later even if you are not yet 65.

plamont

I'm sorry - but my oncologist gave me 6 months - and I really don't want to read a note such as yours saying that as a caregiver to a number of terminally ill patients = oncologists are usually right - and that from your experience it is about 8 months.

I am trying to keep hope and the INSPIRE website gives me hope - there are many women on this site who have lived past the initial prognosis and are still living each day to the best of their ability. I am a 56 year mom of 3 - just recently diagnosed with breast cancer and mets to liver - and I need to cling to hope that the doctors are wrong with their 6 month prognosis - I will endure this cancer long enough to see my children grow a bit more - I think many people are lucky to even have the chance to see grandchildren! unfortunately that may not be in the cards for me - but I just want to enjoy every moment with my loving husband, and 3 children without reading a depressing note stating that in your personal experience it is about 8 months. This site is for people trying to live and fight this disease and we don't need to be depressed more than necessary - we get that from our oncologists! I am inspired when I read about women living with this disease for more than 5 years - hope has a lot to do with your fight! and if I listen to the oncologists I would be digging my grave right now! I refuse to accept their prognosis and I do feel much better spiritually and physically keeping positive and keeping the faith. This is a battle we wouldn't wish on anyone - and we need uplifting stories - Pls go elsewhere as you don't belong on this site - you are not living with cancer!

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