Eating issues and genetic results

Posted By
PNK FLOYD
12/1/2017 12:07pm
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Replies: 2

Hello everyone, this is my first post.  I am the wife of a great man fighting this Stage lV melanoma world.  While there are many questions and I have learned a great deal from you melnoma warriors, the biggest concern now is the weight loss.  METS on liver, stomach and right pelvis.  Fullness and bloating and little to no room in stomach for food or liquids.   2 days ago removed 2.4L off stomach and 0.9 of L lung and 0.7 off R lung.  9 lb difference.  He is starting to get bloated already and only able to eat small amounts daily.  Dr. has not been a great help.  Did start him on Lasix 20mg 2 days ago but not making much of a differnce.  We can't afford to loose anymore weight.  Treament #3 of Obdivo on Nov. 28th and recently received news of his genetic results.......NRAS - Q61K.....I am just lost in all this and what it means.  Debating on a second opinion?  Intial diagnosis March of 2017.....how did we get here?

The Floyds

I am sorry for what you and your husband are dealing with.  I hope he is being seen by a melanoma specialist.  It can make all the difference.  Surgery and radiation may be helpful.  Immunotherapy works best with the lowest tumor burden and can take time to work (average time to response is 3 months) so surgery can sometimes be a helpful way to decreased that burden and make the patient feel better (ie decrease pressure from tumors on vital organs), though it is not without obvious risk.  Many studies demonstrate that when radiation is combined with immunotherapy (like Opdivo...the anti-PD-1 drug your husband in now on) the patient can gain benefits greater than when anti-PD-1 or radiation is used alone.  Additionally, Opdivo has a general 40% response rate when used alone.  When it is combined with ipi (also called Yervoy) that response rate can be boosted to 50+% though side effects may be increased.

Here is a post I put together about melanoma treatment generally:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  

Here is a post regarding treatments for NRAS melanoma patients:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-hope-for-nras-melanoma.html  

Hope this helps.  Ask more questions as you need.  Celeste

Thanks Celeste, and yes he is being seen by a melanoma specialist.  The dr. has never mentioned radiation and the advanced melanoma is unresectable.  I have read about the combo, more than likely from your blogspot.....I have been searching through much of your stuff.  Your info is so valuable, thank you!  Dr. office just called and will have an open order for him to be able to go in and drain the fluid when he feels ready.  And I requested we only be seen by her from here out.  We will get a CT scan next Wed. to see if the treatment is working at all although we know it is still early yet.  I have been in contact with the Oncology Info specialist at the Cancer Treatment Centers of America in Chicago and close to scheduling a consult for next week and get a second opinion?  Just trying to decide on that.  Thank you for the links you posted!!  

The Floyds