Yesterday we met with our oncologist, so I'm sharing an update. This has lots of technical stuff included.
Wayne is stopping the Braftovi-Mektovi targeted therapy combination as it has had no apparent influence on the melanoma. As a result he will also stop other meds he was taking to deal with side effects: clindamycin topical and doxycycline (for impressive pustular rash that broke out on face, back and chest/abdomen, then got much better with doxy and turned into chronic skin flaking).
As shared-decision making with our doctor, Wayne has decided to take at least a 2 week treatment break to see how he feels without the Braf/Mek inhibitor drugs onboard. Then a decision will be made between three choices below:
1. mild oral chemo drug called Temodar (5 days on, 28 days off) for 2 rounds
2. if accepted in the clinical trial screening or per expanded access, may take oral cabozantinib as part of a trial/ expanded access drug use (currently used for kidney cancer inhibitor for folks with a Met amplification genetic alteration; being studied now for melanoma with this genetic profile, which Wayne has)
3. or if accepted in the clinical trial screening or per expanded access, may take oral crizotinib (a kinase inhibitor currently used for non-small cell lung cancer; also being studied for melanoma with Met amplification genetic alteration).
#2 and 3 are two arms of the same trial.
Here is a 2018 review article about c-MET: ncbi.nlm.nih.gov/pmc/articl...
Article Summary highlights:
"In summary, current strategies in oncology shift towards the targeted treatment exploiting identification of crucial signaling pathways for metastatic spread of tumor cells. The involvement of the HGF/c-Met signaling in solid tumors, including melanoma, prompted development of new drugs, which have already brought benefit in clinical setting. In the treatment of NSLSC, the crizotinib doubled the survival of patients [70]. We suppose that it might bring benefit for the melanoma patients in future as well. Disrupting the HGF/c-Met signaling may interfere with tumor cell scattering thus affecting the metastasis dissemination. Its physiological function, which is restricted in adults, brings potential tumor-specific effect...
However, it must be carefully evaluated as there might be unwanted side effects of the treatment. We have observed increased tumorigenicity upon interference with the HGF/c-Met signaling with the SU11274. The precise mechanism may involve multiple processes including compensatory receptor crosstalk and it is to be further investigated. It has been shown that the crizotinib induces alterations in the secretome of the melanoma cells contributing to the emergence and expansion of the resistant subpopulations [86]. It remains to be further investigated, whether it is possible to avoid blunting of the inhibitory action by other types of inhibitors, by their combination or by combination of the diverse therapeutic modalities to efficiently limit propagation of tumor cells. Other potential risk of the HGF/c-Met inhibition by the systemic treatment is in affecting the tissue regeneration and damage repair processes in patients, although we did not observe any side effects on our mouse models upon SU11274 administration."
Any of the choices would be tried for 2 months followed up with a CT scan for effectiveness with our long-time as our quarterback.
We reviewed all the meds and Wayne will continue to test oral Marinol (THC) for nausea control to see if it's less sedating than the compazine. Will see if zofran can be reprised inbetween for doses, if not, back to compazine.
Continuing low dose steroid (decadron, 2 mg twice a day) to help fatigue and nausea (but has caused thrush, so taking clotrimazole troche lozenges to help because oral fluconozole is a "don't use" drug with Mektovi/ Braftovi combo).
Continuing with IV hydration twice a week.
See the oncologist again Jan 2 to see where we are.
So here is the emotional/practical impacts and adaptations for us at this point.
We are taking things a day at a time. I got permission from my employer to work remotely FT now so I can be home, which makes both Wayne and me feel better. He eats and drinks better with me here to check and prompt, and I'm less anxious being here, too.
Wayne is so fatigued that he is mostly in a "checked out" place: no reading/ music/TV/ writing/ work/ walking/talking or exercise. His weight has restabilized, but his muscle mass is shot.He feels better in a prone position and doesn't tolerate sitting up very long (may be how everything shifts in his liver or GI tract?) He will usually watch an hour of TV at night with me (I tempt him with UVA basketball, Downtown Abby, The Marvelous Mrs. Maisel or Great British Baking Show), but he's mostly back in bed by 8:30 at night, so I read in bed until I go to sleep.
We both sleep fitfully. I've seen more "dark time" to sunrise in the past 2 months than my lifetime combined. Our cat is the only one happy about this turn of events.
We are getting supportive and practical help.Our church family has been amazing and we have a riduculous stockpile of Uber Eats gift cards to lighten the shopping/ cooking burden. Bland foods, gingerale with gatorade or pedialite cocktails have been the go to since thrush has made water taste "bad". Our families check in on us regularly, and in the past 2 months we have made a point to get Wayne to see his siblings, mother (before she passed 2 weeks ago), cousins, children, nieces and nephews. My sisters who wish we were not 100-150 miles apart have started sending a maid service to clean the condo once a month (they even vacuumed the walls the first deep clean visit!) Our neighbor has more than once jumped in for emergency Miss Scarlett cat care. Folks are so generous with inviting us to holiday visits, but are also flexible in that we just don't know until the day of if we can take on being in a place with other humans or travel. Our melanoma support group is also awesome, sending love, tips, articles, and even offering to come do "work around the house" that historically Wayne tended to. They know this road exquisitely, just like this community on HealthUnlocked appreciate.
Negotiating for information and decisions with our medical team feels supportive in the right direction and they have altered doses, sometimes just for a few days, so that Wayne could fully participate in his mom's memorial service, have energy to see his family, go to our daughter's graduation from nursing school and now hopefully not be so treatment stressed that we can visit with immediate family over this holiday.Our mental health therapist has offered to come to us since getting to downtown DC would be a challenge for Wayne at this point.
Having difficult discussions and keeping others up on "how we are doing" is a two edged situation: it's good to be supported, but it's also tiring to go over things a lot. I continue to be the initiator about the territory we are facing: what treatment is enough? How can interventions be balanced against a life that has a purpose for now (different than a purpose even 3 months ago). What are the intersections of palliative comfort and transition to hospice care? We can each only tolerate these conversations in small bites, but we continue to have them together, and with providers.
We don't feel festive, but we do have a tree up with about 1/2 of our ornaments and it is a comfort to have the lights on. I'm torn but clear that my primary place needs to be here with Wayne this year, which is sad because that means we are likely not able to be with my mom on the second anniversary of my brother's death on Christmas Day. We have to work with what is, not with how we wish circumstances could be.
My anxiety remains, but has retreated to a manageable place since I have come to grips with 2 truths: There will never be enough time with my beloved and We are doing the best we can do, and that has to be enough. I'm haphazard in getting to a monthly mental health session with a massage, but I know it's there, even if I cry through the whole hour. We probably cry a little bit each day, but it is a sad time, so I think this is realistic. I avoid most of the news, which I find infuriating and hoplessness inducing. Each night at dinner we say aloud 1-2 things we are grateful for from the day. I pet the cat often and sometimes stay in my pajamas all day, because I can. We are content that each of our children is in such a good phase of life and flouishing (our son just got engaged to a fabulous gal). I or we go to church and we have adjusted, again, our finances and investments, so the spiritual and economics around our needs are addressed. We are moving in January to Wayne on permanent disability, the official leaving from his job, and insurance changes for us both.
So. So much information. I've not been able to muster energy to post, so you are getting it in a lump. Thanks.
Peace,
Missy
I have returned to crocheting "jingle socks" for my great nieces while sitting at 2-3 hour long hydration appointments twice a week.
New member — husband stage IV melanoma
