Hip pain

[kellyOd]

So Ryan has been through the loop.. about every 30 days since August 23rd when we learned of his brain tumor something new has popped up.. the lung tumor that is 4.7cm and now left hip pain to the point where he can’t walk. Where did this come from? Is this a sign the cancer has spread to his bones? PET scan is tomorrow October 25th so we will REALLY know what’s going on.. but once it hits the bone is there any hope? Is this the end? What options if it has gone to his bones.. bone marrow transplant? I dunno.. any experiences anyone is willing to share??? Much appreciated!!!

[missyrand Ambassador]

Standing on the precipice of more information for me is always the worst points. Once I can absorb new details, ask questions and then move to a decision, then I feel relief, even when facing awful news.

I hope you and Ryan will be supported well to work through whatever the scans present today. Asking direct uestions about progress, updates, and liklihood of improvements helps to make informed decisions. Especially around pain management.

You may also want to ask about if your husband qualifies for any of the clinical trials for melanoma at NIH. It takes a referral from the doctor with the appropriate lab data for that to move along. I don't know if he is a possible candidate for TIL (Tumor Infiltrating Lymphocytes) one of the newer stage 2 treatments currently ongoing there. One of our support group gals from VA got in within days of calling for an appointment, but after they did a work up, she was not a candidate.

You are in our hearts, Missy

[kellyOd in reply to missyrand]

It was the worst news we could have received. The cancer has spread to multiple vertebrae more than 5 less than 10 I believe.. T & L vertebrae. And also in his pelvis.. he is BRAF positive so the oncologist is ordering the oral medication the one that is really aggressive. Don’t know the name yet, a lot of information was given in this one phone call. Keytruda is being called off... not the news we were hoping for....

[missyrand Ambassador in reply to kellyOd]

Oh Kelly this is very hard and heartbreaking.

You have a lot to sort through. And perhaps have questions about palliative care vs hospice care consultations. I hope there is pain management onboard to couple with the Braf meds.

We continue to stand with you

Missy

[kellyOd in reply to missyrand]

We have his palliative care appointment on the 5th. I hope it works..

[Hidden]

My daughter had a similar aggressive spread. Hers started on leg and groin, up to pelvis, back bones, liver lung and brain. She started with Opdivo, then added Yervoy. Progression continued so they stopped Yervoy and added the oral chemo. She started Tafinlar/Mekanist, did 5 weeks and had awful side effects. It did stop the progression though and allowed the immunotherapy to work and start shrinking metastasis. She started new chemo this week, Braftovi/Mektovi, and is tolerating well at lower dose.

I know how terrifying this aggressive progression stage is, and it feels like an eternity I’m sure Kelly. Sounds like your doctors are on it! Don’t lose hope! My daughter also has the Braf mutation and these meds worked for her. And there is more than one available if one doesn’t go well. Stay in touch!

[kellyOd in reply to Hidden]

Omg can you message me and tell me more? I’m freaking OUT.

[Bigsister3 in reply to kellyOd]

Hi Kelly

I’m so sorry they gave you this news over the phone. It is so much to process but I felt the same as missy as a caregiver it helps to focus on what you can do next. My sister was Braf positive and did the combo first ipi/novo then mekinist/tafinlar many side effects but she managed through and had the progression slowed but hers were very aggressive. I am glad to hear about palliative they were wonderful for us. You are in my thoughts.

[kellyOd in reply to Bigsister3]

Thank you. It’s only getting worse.. I wish I had good things to say.. but I don’t. Cancer is virtually everywhere but his arms. Ribs, both femurs right tibia, left hip, his whole spine.. let’s just hope the Mek/taf stops it from spreading even further.. thank you for the thoughts

[missyrand Ambassador in reply to kellyOd]

Kelly: I hope that fall prevention is in your plans, too. With bone involvement, breaks can happen.

Still standing with you. My husband has CT scans today to see if he has responded to Yervoy. He continues with daily GI side effects even though last treatment was Aug 31.

Missy

[Bigsister3 in reply to missyrand]

Good luck with the scans missy. We are here.

Kelly I am sorry about the spread of the disease and again I am glad you will have a palliative team on your side to help you through things. Remember they are there for you too if you have questions or struggling so take advantage of them.

[Hidden in reply to missyrand]

Wow that’s a long time! Our oncologist is starting a steroid for the stomach and intestines. He said it won’t affect the benefits of immunotherapy and won’t leave the digestive tract. Can’t remember the name though.

[Hidden in reply to kellyOd]

I know how scary this is for you. Very similar to my daughter. It was hard for me not to fall into despair during this time of constant bad news. One thing the doctor told me that helped was “cancer that grows fast dies fast”. I tried to hold onto that. But that has been our truth. One month after starting the Braf/Mek she showed signs of shrinkage. But that month felt like an eternity! Hang in there! And I hope they are giving him the shot for his bones, Xgeva I think it’s called.

[missyrand Ambassador in reply to Hidden]

For some folks the BRAF/ combo BRAF meds give dramatic shrinkage, which is awesome.

For a few folks this continue to hold the melanoma at bay and they can stay on these meds for ongoing chronic management. The literature indicates, however, that for most folks it is a stop gap measure that gives this improvement for only months. But that means there is time to evaluate next steps, including considerations for clinical trials.

It's hard to do, but if the illness is aggressive, sometimes you have to try to "double up" and investigate next steps while you're in the middle of trying one treatment. Your oncologist would be best prepared to answer questions like:

What can we expect from this treatment?

What is your experience with how long it helps?

What else can we be lining up now as a next step?

Is this palliative or curative in nature?

I'm making similar lists of questions for our consultation tomorrow.

Peace,

missy

[Hidden in reply to missyrand]

That was hard to hear. My hope was that the combo would stop the progression long enough for the immunotherapy to catch up. I would be interested in seeing the literature you are referring to.

[SGHSweethearts in reply to Hidden]

Dwalach, for my husband who has Advanced Stage IV Metastatic Melanoma. The Taf/Mek did slow the progression and give that time for the immunotherapy to ramp up. I will pray that that will be the case for your husband as well.

Michele