If you are not Stage IV but have questions, you may post here

First of all, thank you for this opportunity to ask questions. This is my first post ever but I have drawn strength and had lost any feelings of being alone in my quest. On this site in general- I could type in what I was thinking and find threads that affirmed things for me along the way. I think that I might have the sign off like everyone else because I typed in my info when I finally signed up- but just in case- I was dx with triple negative invasive ductal carcinoma stage 3 grade 3 locally metastasized left breast cancer on Aug 3, 2016. I did 12 wks of weekly taxol/carbo and then 8 weeks of AC Double mastectomy and spacers then implants. Only went to a few appts for blood work before my insurance dropped me. Ok so here is my question. I have had shoulder pain on and off for a year or so. Within the last couple months I cannot straighten my right arm fully. I am puffy but less so than with all the steroids- take no meds now - none since the mx. recovery pain meds. I can tell my neck is thick and my body is way different, and I am trying not to be a 'fraidy cat. My grandson and I were lying on the couch watching tv and he put his hand on my ribcage to push himself up to go play (he is 3) and I felt like a rib cracked. That is not normal. I have been depressed or just out of energy for too long. And my boyfriend noticed when I showed him the swelling in my neck is so bad that you can't see my clavicle anymore- you can feel it but it is swollen above it and quite obviously. I think it's lymphedema but why in my neck? Not having insurance or stable work is keeping me from seeing a doctor. My very long leading up to is this question- does anything you read here remind anyone of symptoms I need to be concerned about? Again - thank you for letting me ask. Thank you, Thatone Chick

Hi there I'm writing this on behalf of my wife. She's 43 and dealing with her 3rd round of breast cancer. She was first diagnosed with Stage 3 ER+ breast cancer about 10 years ago. Because of her age that was treated aggressively (chemo, radiation, Double Mast, and ovaries removed) . About 3 years ago she was diagnosed again ( I don't have breasts anymore, how do I get breast cancer again? was her initial thought) She went through surgery, chemo and radiation again. About a year ago she went in for a prolonged cough. Test revealed that the breast cancer was back and that she now had Lung, Liver, Spine, Rib, and Skull mets.

About 9 months ago she was able to get on a clinical trial. (I am not sharing the drug name because I am not sure if we are under NDA). She's been undergoing a weekly infusion of a trial drug with two other drugs that would be considered the standard of care. The result up to this point have been good. The cancer in the soft tissue is gone (although there are a couple of areas they are still watching). The bone mets haven't shown any progression, but they aren't showing much improvement. Drs said that this is too be expected, and that it could be working without it showing improvement on the bone scans.

Here's the issue where we'd love feedback from others: The trial is really draining on my wife. It means she spends at least 6 hours a week in the hospital, The trial drug also drains her energy for about 48 hours post infusion. Also in general on the weeks when her wbc counts are too low to get the trial drug she feels much better. The Dr.s aren't confident that the trial drug has done anything to this point. That's to be expected though.

Would you continue on the trial?

What we've been talking about with the Drs is whether the unknown potential lifespan gain outweighs the diminished quality of life in the short term.

Are there other things we should be asking the Drs?

Right now the outstanding questions I have are:

Does my wife have the genetic markers that indicate the trial would likely be successful for her? (I think the answer is no but I need to confirm)

If she doesn't have the genetic markers how likely is it that the trial drug is making an impact?

Thanks for you consideration in reading this and I'd appreciate any input.

Hi guys, I wanted to ask a quick question.  I sometimes have a dull ache in my shin bone...   and am not really an exerciser, so didn't get hurt recently.  The ache comes and goes but is always in the same spot.  No lump there.  I talked to my MO, and she said if It were to be mets, I wouldn't get it in my lower extremities first, so it's a shin splint or something like that.  She said in her 20 years of being an oncologist, she's never had a case where mets appears first in the shins.  Someone else told me this as well about a year ago when I brought it up, and again, it's only occasionally, not constant.  Do any of you have further info on the whole lower extremities met area thing?  thoughts? 

Thanks DLB

Her standard of care drugs are Ibrance and Faslodex. She has had two rounds of genetic testing, I need to check what the most recent round was called. I believe that round was used to identify what trials she would be eligible for. I remember that she didn't have anything that was remarkable in the either round of testing.

In this weeks meeting with the Oncologist. The oncologist confirmed that the lethargy was a result of the trial drug. She basically sleeps lays in bed for 24 hours after her infusion of the trial drug. The Oncologist told us that they have to weigh a definite quality of life improvement against an unknown improvement in life expectancy. It felt like the Oncologist was encouraging her to drop the trial, without explicitly stating that. Part of me wonders if we haven't asked the right question. I believe there is a genetic marker that's can be used as an indicator that this trial drug will block the pathway that the cancer develops on. I think my wife does not have this marker. I want to ask if she doesn't have that marker, how likely is it that this trial drug will actually help.

I think we grapsed for anything that could be a lifeline early on not really weighing the the likelihood of it having an impact. Now that we can see a quality of life impact I think we are weighing those costs against the potential benefit. I know there aren't any guaranteed outcomes.we're just trying to make the best possible decision knowing that there is a good chance that at some point in the future we'll likely be looking back and second guessing every decision we made up to that point.

IamTrike, as you realize, you can pull out of the trial at any time. And side-effects really matter.

I assume now that this is the trial with the PI3K inhibitor. It's a funny thing about that drug. You'd think it would work more for people who have a mutation, but this one doesn't seem to be that way. There was an abstract at the last San Antonio Conference about it.

But. Yes in general if you don't have the mutation you won't respond. Most of the trials require you to have the mutation before you can enter it? This one didn't?

If you want to pull out of the trial here's something to consider. Your wife has had 9 months of the drug. If it does have benefit, she has already received some of that benefit. Maybe most of it, who knows?

To me quality of life matters. A full day in the hospital plus another day in bed every week as your first treatment is a lot. This is the time when you should be living well. As the cancer gets worse the treatments get harder.

Why not go into the oncologist and say, "this is awful, I want out. Tell me why I should stay in." If he or she has some good reasons you can weigh them. If he or she agrees with you but didn't want to influence you, they'll be right on board.

Thank you all...it is probably the Tamoxifen and bone pain.  Today both hurt and I figure it's that.  

Pajim and Dlb thank you both so much for your responses.

Pajim, you are correct about the type of trial. I'll look to see if I can find the abstract from San Antonio. I've looked around a fair amount online and haven't found much information about this drug. I would have thought that she would have had to have the mutation to be eligible for the trial too. Before she started the trial they did genetic testing on the cancer not just on her. The profile of the cancer was to look for additional trials, and to build up a broader database of cancer information. Nothing remarkable showed up in this test. I think mentally I have mixed the results of that testing with other testing that's been done. I know when she first went through genetic testing for herself that she didn't have any of the genetic markers that indicated breast cancer would be likely. I realize now that those results don't provide clarity about whether or not she has the gene which indicates Pi3K inhibitors would be helpful. We'll talk with her oncologist about this in 2 weeks.

In reading your response this really stood out to me:

"To me quality of life matters. A full day in the hospital plus another day in bed every week as your first treatment is a lot. This is the time when you should be living well. As the cancer gets worse the treatments get harder."

I think the first two times she went through Chemo the Dr.s emphasized that this was going to be a hard period. It was going to kind of suck, but that was all part of trying to rid her body of cancer to reduce the chance of recurrence. I think going into this trial there was still a bit of our mindset event though the Dr.s had shifted to talking about quality of life. 9 months in though, she's looking at it this really the way I want to live. It's definitely something we are weighing now.

To your point about talking with the Oncologist, in our meeting with them earlier this week. My wife was expressing her concerns and the Onc seemed almost like she was eager for us to drop the trial.

DLB , It is a phase 2 study so I haven't been able to find much information about it. Searching on this board there are not many mentions of the particular study drug she is on.

Thank you again both for your thoughtful responses. When my wife was first diagnosed many years ago she got some advice from a slightly older woman who's quite and inspiration. That women had stage 4 bc and is now running triathalons and marathons. Her advise was to do whatever it took to try and stay in a positive head space. She recommended we do that by having me filter some of the negative information before it gets to my wife. We did that for both of the prior rounds and it worked well. It's been a little harder this time, but we are still doing something similar this time.

Dear redpoppyx
How devastating for you all. Your family member with cancer is very fortunate to have you. It seems trite to say just be there for her but that is my advice. Just let her know you are there to care, help, support in whatever way you can and whatever manner she wants. I have family, friends and a small community who have made the last year doable. I have a work colleague who sends me random texts with emojis (flowers, sunshine, clover) just to let me know she is thinking of me. No need to reply but I know she is there if I need her. It is a tortuous time and everyone reacts in their own way. If you find it difficult to speak with her maybe write her a letter and express how you feel. It is wonderful that you can be there for her and her family. Everyone is affected by this horrible disease. The uncertainty is a big challenge and can be very frightening. Let her guide you but don't let too much time pass without telling her how much you care.

Redpoppy...I’m so sorry to hear of another situation with MBC. When I was diagnosed the first time with BC, we had supportive people in our community and at church who brought food/dinner for our family ever so often. That was a relief, of one more thing I didn’t have to think of on that day. If you live far away, gift cards to restaurants so the husband or someone could stop to grab dinner on the way home, flowers, or even gift cards for cleaning services are very useful, as you usually don’t feel up to doing much when on treatments. That was my experience anyway. If you could find a home delivery service for prepared food would probably be very much appreciated. I’m just throwing out suggestions that we appreciated so very much when I was first on “the bad” treatments. The suggested cards is always a good idea. I’ll be praying for her, her family and you for healing, peace and understanding.

*also....they are making great strides with “Proton Therapy” here in Northeast Tn in Knoxville. If interested, just search “proton therapy”.

I have a question. My mom is almost 8 years out of a stage 2, grade 3 cancer dx. Er+ so she’s been on Armidex this whole time and has dealt with a ton of joint pain. Two months ago, she had her labs done and her oncologist commented on how great they were...they were the best they’ve been. Two weeks ago, she started getting low back pain. It’s constant & just feels like a “dull ache”. I talked Her into calling her oncologist and she’s has a PET scan scheduled for next week. I’m praying it’s nothing serious but I’m so glad her dr is being proactive. Are the recent great Labs meaningless???

dlb823, I like that Conditional Survival chart! I'm only one year last MBC dx bit those statistics are encouraging, even while I also know how statistics work.

Hi everyone and thanks for this thread. I was wondering if anyone was diagnosed by way of a large liver mass?

I have a benign kidney tumour called an AML that was diagnosed incidentally in June of 2017 when I had a CT scan for something else. It has to be monitored because the size is borderline and they can hemorrhage. In April of 2018 my CT scan showed my AML was stable and everything else clear including my liver.

Fast forward to two weeks ago when my new urologist (I moved to a new state) suggested we do an MRI. The kidney is the same but I have a 5 cm liver mass that needs further testing. BTW all scans I've had used contrast so this was definitely not on the April scan.

If course I am nervous. After reading about liver cancer i don't seem to be a candidate for that but who knows. I'm concerned about Breast or Ovarian metastasis. I have no history of either but am one month late for my annual mammogram. After reading up here I know that mammograms are not dispositive anyway.

Anyone else diagnosed by a totally asymptomatic large liver mass? Bloodwork done in late Nov was all normal. Thanks again this forum is so informative.

Thank you Tennessee. You've been more responsive then my doctors!

RowWellandLive, as TNMTNGAL said, here is a topic that you may find interesting: Topic: How are people with liver mets doing?

Hope it helps!

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