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Stage 4 and looking for your guidance

Stage 4 and looking for your guidance

Posted By
ArtandAmy
2/11/2020 8:32pm
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Replies: 9

I have been following this page since September but I am finally posting as I am looking for everyone's guidance. Following this page has made talking to my oncologist easier. I always felt like I could have an educated conversation because of everyone on this page. I was diagnosed with 3b back in 2016 and had a few years of clear scans. I was diagnosed Stage 4 in September with cancer in 7 different areas in my body. Bones, Lung, Spine, it's not good. I am BRAF positive, 47 with 3 kids under 10. I want more time. My last scan showed no new cancer but the cancer in my bones (hip., shoulder , spine) show no signs on shrinking. I am on Zelboraf and Collectic (targeted therapy). We discussed giving the therapy more time to work or switching to IPI/NIVO or Keytruda. We like our Oncologist but he is not one of the Melanoma cancer doctors that everyone talks about. I am posting tonight for everyone's thoughts. Should we make the 4 hour trip to Sloan in NYS to see that Doctor Chapman that people talk about? My pain is not controlled and that is tough. The spin cancer causes numbness tingling and all sorts of problems in the digestion area.. I need support so tonight I am reaching out to this great group. Is there hope. Is there better treatment for pain in the spine.. I thank all of you in advance.
Art and Amy in NY

So sorry for all that you and yours are dealing with Amy. I am sorry I have no brilliant answer as to how to better address your bone pain in and of itself. I know that it is incredibly painful and hard to manage. Perhaps others will chime in with ideas based on things that worked with them. I do think, given what you are describing, at least a consultation with Chapman may be worthwhile. He may have treatment or pain management recommendations that your local onc can implement. If your targeted therapy is not working then I would switch to the ipi/nivo combo ASAP!!!! You would lose nothing and perhaps gain everything. You could still change to Chapman's plan should he feel something else is better once you see him.

The other idea is the addition of radiation COMBINED with the ipi/nivo combo. Radiation alone is not very effective for melanoma. However, when radiation is combined with immunotherapy we have learned that it produces responses that are greater than those gained through either treatment alone. Here are a zillion articles: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radi... Additionally, folks with bone mets in particular have found a response with this combo AND experience decreased pain as well.

Just my thoughts. But, certainly, a melanoma expert like Chapman is a wiser soul than I and picking a brain like that sounds like a good idea at this point. Hope this helps. Ask more questions as you have the need. There are many smart and caring peeps on this forum. I wish you my best. celeste

Hi Amy,

First let me say, I'm so sorry you are here and to go through this with three little ones makes you one tough lady. Many hugs. I will probably be the first of many to say it's absolutely viable to go see Dr. Chapman, a second opinion and more information is always a benefit to your arsenal against this disease or any disease.. He is also involved in clinical research and trials, I believe one if his current trials is actually for BRAF positive patients and using a diabetes treatment, and he will have the knowledge of the current melanoma research if you should ever need clinical trials after your next treatment regimen which hopefully you won't need. Ipi/Nivo and Keytruda are obviously standard of care so I'm hoping that whatever is decided, you start to see outcomes. Everyone here would probably agree, getting to a top specialist is an important variable to manage your care and treatment options. Me personally, I wouldn't hesitate at all, even if your own doctor is doing all the right things, you should always feel ok about getting more information. I have my own personal non-melanoma example where i have a brain tumor/cyst: I saw the heads of both two prominent medical places here in Houston (one a top neurosurgeon in the country, one a top Parkinson's practitioner) and got completely different answers but requested genetic testing, and then I made my own decision with my neurologist on next steps and protocol based on whether there is any growth and my own risk/benefit ratio of surgical intervention based on a lot of new research coming out from the National Institute of Health that both were not aware of. Just an example of why I believe it doesn't hurt to get multiple opinions.

Also, sounds like pain management is needed too.

Whatever you decide, just sending you positive thoughts and vibes, want you to be there with your kids. I know others on the board can speak to going through Stage 4 while raising young kids. You are a hero regardless.

Hugs,
Jackie

Jackie <3

omgosh so happy you reached out!!! I know the very wise ones on here with lots of knowledge and direction will pipe in soon. I am from Toronto Canada. You must must make that drive. No one can work as hard for you other than a Melanoma expert. There is no waiting ....you need the very best care and the best plan. You can do this. It's scary but when you are in the right hands of experts you will see that future. And yes I had Mets to the spine. SRS (radiation surgery and nerve pain medicine can help the spine and tummy pain) Melanoma experts help us in this regard as well. And if you are at a top research hospital they will study your tumour and know what markers to look for to see if you are getting response. Again you can do this. Is tough and a beast. Just wait the other good folks who are the American experts will give you some amazing advice. Be strong , hold on tight!!! Hugs from Canada. Tracey

<p>Double TT- Toronto Canada</p>

I can’t advise on treatment but these are the things that have been helpful for our family (husband, me 46, kids 12, 10, 7).
— meal train was from loving people but it was hard to manage, generated some waste, and not popular with kids or husband
— another friend set up grub hub accounts and got donations from friends, this was super helpful both in terms or feeding the kids, escape from the grind, the occasional splurge
— same thing from another friend of WHole a Foods gift card
— take offers for rides and childcare
—- other than the very occasional visit, my mom generally takes me to major appointments where I need a companion and is this best waiting room warrior, meanwhile my husband focuses on the minutia of kids; other people find the reverse to be true: it really helps me to have someone reliable to focus on my kids and that helped me to focus on me
—- no school buses here so getting the kids to three different locations every day was a major stress, we hired a morning driver who was rather expensive and worth it, it was easier to get shared rides home when we needed it
—- I was approved for SSDI in 12 days through the compassionate allowance program, my kids about thee weeks later; it really helps with the bills and for the first time I was grateful I worked so much when I was young
— extra child care was really needed in the summer
—- give yourself the freedom to parent a little but differently than you might have preferred,

Radiation sometimes helps with bone cancer pain. In September 2015 I received radiation to a melanoma tumor in a rib. After this radiation I had much less pain in that rib. The pain was back in November 2015 and I began Keytruda immunotherapy. I do not recommend a wait like this between radiation and immunotherapy. Please consider receiving immunotherapy and radiation concurrently. Keytruda immunotherapy failed me. Perhaps it might have worked, if begun earlier.

Bone cancer can be very painful. I took Tylenol or Oxycodone-acetaminophen to control pain. In February 2016 walking became very painful and a March 1 2016 PET scan showed melanoma in my ribs, spine, hips, shoulder and femurs. Ipi + nivo immunotherapy made my bone cancer disappear.

Thank you everyone for the posts. This is exactly why I took the step to register and seek support. Everyone has given me hope. This page is so wonderful. I have called Sloan and we shall see. I love reading everyone's updates. I will let everyone know what Sloan says in a few weeks.

Thank You Again.

Amy and Art :)

Unfortunately i cant speak to the specifics of your case. I just wanted to say to keep your head up and stay positive. There is hope. We are here to give you support. Make that drive and dont think twice

Good for you! Two heads are always better than one!
Melanie

Hooray for pursuing a second opinion. It will either help you feel more confident about the treatment you're getting or open up new, important options.. Regarding pain, if your treatment facility has a palliative care specialist, I'd highly recommend; it's not just about the end of life (which many mistakenly think), but about quality of life right now. Too, I second other people's encouragements for getting help with your daily life--a driver, child care, etc. The reduction in stress can support your treatment. Wishing you all the best. Keep us posted!

October 2017 primary scalp WLE; SLNB; partial neck dissection (PND). July 2018 recurrence in neck. August 2018 second PND. September 2018 started Nivo. December 2018 SRS for brain met January 2019 Pisces trial IL-12 + Pembro. .