"Running out of options" Help.

Dear Seven,

I am not HER 2+, and I have ILC, not IDC, so my info won't be that specific. However, I have had amazing luck lately with contacting docs who have done research in some very specific points by just emailing them and asking them their suggestions. Another BCO person suggested looking for the top cancer centers in the country and starting there, and I did that plus looked on PubMed for articles written within the last couple of years to come up with folks to contact. Some of these docs actually DO care and will write back to you if you email them. Often, you can find an email contact within an article that you find. Or else you can simply call a NCI designated cancer center and see if they will give you an email address. One place gave the email address of the department and promised to send the email directly to the doc.

One question I would have for your doc, if she thinks you look yellow, is what is going on with your liver function tests. If those are normal, your MO could look at a more specific test that could pick up stuff in your liver, such as a CT scan of your abdomen or an MRI of your abdomen. However, I don't know if those need time after radiation either. But these are places you could ask your doc to start, perhaps?

By the way, the Cleveland Clinic IS listed on the best cancer hospitals in the US on the US News list as #9.

It ain't over until it's over -- so try to hang in there and see if you can get any other info from your MO. I'd also start reaching out -- maybe start with the Cleveland Clinic if that's someplace that you can get to easily.

I will recommend Dr Keith Block, an integrative MO in Chicago. He works with rebuilding your system naturopathically, and he has innovative ways of providing chemo which means he can help a lot of people told 'we have no more options.' I had a consult w him and followed his program and I think he's brilliant.

Seven, it is not for your MO to decide when you are out of treatments. I am pretty much at the end of the rope as I have cycled through all the treatments that I and my MO think will work. He is now in open-minded, creativity mode. I am currently on tamoxifen (which I took in 2007 for 5 years) and navelbine and the combo seems to be working whereas each by itself may not have worked. Next, my MO is going to try to get me on an unapproved drug cocktail with approved medications (such as Alpelisib, Ribociclib and Faslodex) or Xeloda and a second chemo. I have already taken Ibrance, Faslodex and Xeloda. I just recently tried a clinical trial of a new FGFR1 inhibitor, erdafitinib. It didn't work for me but others have had success with it. My MO is also suggesting testosterone. I know you are not hormone positive and some of my treatment options wouldn't work for you but my point is that you can keep trying treatments so long as you want to do so. There is at least one person on these boards whose MO tried to push her into hospice nearly 2 years ago. She was about the sign the papers and then changed her mind and is still here today. As for looking yellow, how is your bilirubin? It would be very high bilirubin that may make you look yellow. The last 8 months or so, I have been struggling with my hemoglobin, although not to the severity of yours. I am not sure if it is caused by various chemos, bone marrow mets (if I have those - never been tested) or a combination. For me, my RBC, WBC, ANC and almost everything else is holding up well except lymphocytes. I recently added a vegetable based iron supplement, which has helped prevent the hemoglobin from getting worse with each navelbine cycle. I may up it to a standard iron supplement if needed. I also eat a red seaweed called Dulse which is packed with iron. The blood transfusion will make you feel much better and should buy you some time to think things through with more energy. I had one in December and it was great for a while. Good luck finding a place to have a second opinion.

One of the ladies in my support group at church goes to the Cleveland Clinic. Excellent medical facility, staff and reputation.

Good luck!

Diane

Seven11, when the MOs are out of ideas, its time to try some clinical trials,they have lots of ideas!!

The immunotherapy trial that kattysmith is having success with was designed for triple-negative cancers that have run through the standard stuff- if you are willing to travel to St. Louis MO, here is a link for that trial: https://clinicaltrials.gov/ct2/show/NCT03661632. That trial includes an EP4 inhibitor and even accepts patients who failed on immunotherapy as monotherapy. But anyway there are lots of trials for TNMBC that include immunotherapy, too many to even list here

Plus the FDA recently approved the combination of Teqcentric (immunotherapy) with chemo for TNBC, it doesn't seem you've tried that yet? https://www.healthline.com/health-news/fda-approve...

Seven11 I'm so sorry for what you are going through. I can relate to some of it because I'm also dealing with resistance to HER2 targeted drugs for some reason and now chemo resistance (and skin mets). I wanted to respond to your question about PET scans after radiation. I recently finished 2.5 months of rads (70 Gray using a bolus part of the time to concentrate on my skin) for skin mets, nodes and a tumor tangled in my brachial nerves. My RO made me wait 4 weeks before I could have an MRI because we had to wait for any residual inflammation to reduce, and another 3 weeks after that before I could have a PET/CT (which my MO felt was still too soon, he prefers to wait 3 months). The reason they both gave me is that the radiation remaining in your body from rads will light up on a PET scan the exact same way mets do (if they use contrast), so it won't be clear what is due to mets and what is just remaining radiation. According to both of my oncologists It takes months before enough radiation leaves your body for a PET scan to be reliable. If you're getting a scan this soon, I guess the most important thing to remember is don't panic if you light up like a Christmas tree, but I am very surprised that they are having you get a scan just days after finishing rads.

You still have many options left, after Kadcyla it's typical to do "Herceptin plus X", many do Herceptin plus Xeloda (capecitabine), I went back on THP for a while, there's Nerlynx (neratinib) if they don't want to do Herceptin plus a chemo...every time I get frustrated and ready to give up hope my MO keeps reminding me I still have many options to try and we're just trying not to burn through them too quickly.

Skin mets are stubborn and I've been reading how there's a blood/skin barrier similar to the blood/brain barrier, especially in HER2+. When the HER2+ targeted drugs attack the cancer cells, they escape to the skin where apparently HER2+ drugs can't touch them. One drug you might want to look into is tucatinib. In the HER2CLIMB study they are finding that it appears to cross the blood/skin barrier in addition to the blood/brain barrier. It's one I'm keeping in mind for when my skin mets become a serious problem again.