dmarie

2/5 pm – follow up:  Thank you all. Wow. I am humbled by your passion, compassion, knowledge and experience. Today has been really busy – he and I had a hard conversation, and I shared all that I have learned and how I feel about this. He has agreed to put the job search on hold until this is all sorted out – hopefully a positive solution. I spoke with his medical oncologist (melanoma specialist), and he was able to answer many of my questions. I am now waiting to hear from the radiation oncologist, so that I can get more clariity on the remaining questions. These are specific to number and location of mets in his brain, timing of immunotherapy (or other systemic therapy), and if SRS could be done over two sessions if necessary. 

The med onc did mention that the rad onc is fearful that LMD is a possible factor. Ugh.(I didn't need to hear that. Enough is enough).

I was able to get him onboard to have the body scans done as well, so that we will know exactly where he stands with everything else as well.

Again, thank you all for your input. It was all so valuable. Brian really values this – personal experience – over the doctors' recommendations. Your responses helped me to convince him of the necessity of expedience. Thank you, thank you, thank you. Diane

Thank you for the reply. He ended up opting to not do the blood thinners because of the risk of (another) brain bleed. He does have an IVC filter in place (July 2018).

Now he seems to have developed another DVT in his right leg, and this has caused significant swelling in the whole right leg, more so than the left ever had. I don't know if we could get a compression stocking on that leg at all. Hmmm…

Thank you for the reply. Unfortunately we learned the cause yesterday (after CT scans / oncologist follow up). Cancer has advanced, and now there is a mass in his bladder. The lesion they identified in November did not change in the February scan, so "unremarkable". But by this scan (May), it had tripled in size. Dr. is recommending palliative radiation. (Very bad news yesterday…)

Thank you for the reply. We just got back from oncologist, and apparently all tumors have increased, including those in the lungs. This could be the cause. (Although the esophagus looks clear, but could still aggrivate the vagus nerve, causing dry heaves). 

Thank you so much, for all that you do, Celeste. You are amazing, and I am so grateful that you are so open and willing to post and chime in.

So far, so good – no ill effects other than very mild fatigue. Fingers crossed that this continues.

Have a wonderful day everyone! Diane

Thank you – all of you. I do appreciate your thoughts and experiences. We strongly (but respectfully) advocated for immunotherapy to start before WBR, but the rad oncologist was not on board (citing possibility of too many treatments could exacerbate side effects), and the timing of starting WBR (immediately), would not allow for insurance to review (and deny & then review an appeal of) ipi/nivo. 

So he is now mid-way through WBR, and 3 of 5 radiation treatments for femur tumor. He has not been given any steroids, and (fingers crossed), won't need them. WBR ends Monday, he will get infusion of Reclast (for bone mets) on Tuesday, and on Wednesday will start Ipi/Nivo. Not ideal, but as soon as it could be. The up side is that he feels fine, and has had no real side effects from radiation (no headaches or fatigue to speak of). 

Thank you again. Diane

Thank you (again!) I did cite the findings that you noted when I spoke with both docs last week. I was advocating for immunotherapy in concert with radiation, even if it was WBR. The mel specialist was agreeable but the radiation onc was not. He felt very strongly about it too. 

The rad. onc is not convinced it is LMD, but he said that there is a serious concern that it could become LMD. (A radiation pathologist (??) read the scans and thinks LMD – of course without a spinal / lumbar puncture, so purely speculative). But that was the deciding factor for the rad onc to feel strongly about WBR over SRS. 

So now another new wrinkle is the bone mets. (I feel like a salmon swimming against the current, and they keep opening new flood gates, making the current stronger against us).

I feel the urgency of doing the right thing by him but not having the professional (medical) credibiilty to argue my points (to doctors) in a non-offending manner (as a lay-person, 'what do I know'?, right?) So I get it that my requests / desires could be dismissed (ie: starting immunotherapy now and do simultaneously w/ radiation). And then I have to consider the what if's? (What if I push for this, and he is unresponsive to the treatment? What if he does have swelling and the immunotherapy does exacerbate that for him? What if I push for someting that will hurt him further?) This just sucks.

Thankjs. I believe the plan is to start systemic immunotherapy following the WBRT. We meet with the mel specialist on the 20th (10 days) and will discuss detailed next steps. 

Good to know more about Zometa. Thank you. It was mentioned in November, but only in passing. I will look into it further.

Thank you, very much, for replying. He is being seen by a mel specialist, so we feel that we have options available to us. However, at our visit last week specifics were not discussed as to what treatment options were being considered as the next step. I assume ipi/nivo, but that is purely speculative. I assume that the melanoma doc will recommend, rather than us asking for a treatment option – is that correct? 

I plan to talk to either the radiation oncologist or his medical oncologist (mel specialist) tomorrow and ask a bunch of questions. (I have a list, and hope I am asking the right ones! I will re-read your post again and see what I am missing.) They had wanted to start WBR this week, but we hadn't scheduled anything yet, so I know I will be speaking with someone tomorrow. I just hope that we can get everone to agree that SRS is the way to go, and that this is, actually, the right decision for him. 

Thank you, Celeste. I know you have heard this a thousand times, but your advice and efforts to educate are amazing. I have gotten a lot of strength from you. I hope you and your family have a wonderful year…

Niki, thank  you. I totally agree that SRS is preferred over WBR. I just hope that his rad onc will see it that way too. 

I was hesitant on pulling the trigger on a vacation, and now so glad that I was. He learned yesterday that he is being laid off in a month. So now to try to get treatment lined up and done before insurance ends. 

Diane

Thank you for all this great information. I so appreciate it! 

Diane