@rickyb
Forum Replies Created
- Replies
-
-
- December 28, 2018 at 12:03 am
Hi Melvin – I am new to posting and responding and you should know that I am a caregiver and not someone who has Melanoma. But, what I can offer is words of support to tell you that getting it looked at is most important. It seems like melanoma can be a slow mover when it is just in the form of the source mole so getting it out and tested is an absolute must. Your doctor will be able to tell you more about the mole in the pathology but I recommend getting checked regularly and even taking pictures of moles to catalog their progress because it can be hard to notice small differences when we see these things everyday! Know that getting it looked at is the best move right now. Wish I could offer more.
-
- December 29, 2018 at 4:49 pm
Thank you Tammy. i will surely keep you updated and I want you to do the same. I want to stay in touch on because her outlook seemed so poor from our last doctor visit and yet it seems like there are several community members living with stage IV. Do you recommend any speciifc doctors at MD Anderson? We looked into NYU Langone to see Dr. Jeffrey Weber and should have an appointment in January. However, Dr. Weber and our current doctor (Dr. Agarwala) seem to be in touch and I feel their recommendations and treatment plans will be similar. We are paused on treatment right now and we have mentioned other options such as radiation and what it would take to start treatment again and they are sticking tight to wanting the colitis under control before trying again. That said, they said she may only have weeks and she could be on steriods for weeks so it seems like an impossible situation. Appreciate your support and any recommendations you have. Tammy, have you been stage IV since 2017?
THanks,
Erica
-
- December 28, 2018 at 7:21 am
Hi Tammy,
We have not tried Rimcaid to date but that is surely something we can ask about to help the Colitis. Is that infusion based? How long had you been on Keytruda when your Colitis began? Also, was your treatment post surgical or was it given as the primary treatment?
As as for my wife’s cancer, she was diagnosed at stage 3 when we found a lump in her armpit which turned out to be melanoma. Her gynecologist found the lump during a breast exam and Emily had not experienced any pain with it. We also never found her source melanoma.
She was not in pain when first diagnosed and even until recent, did not really experience pain from the cancer. When it returned it was caught on a CT since she had to get CT’s done everything 3-6 months because of the clinical trial she was on. From the time it appeared on her scan to today, it has moved very quickly and she is now in a lot of pain related to the tumors on her liver and spleen. However, all this pain is relatively new. I think I noticed a post on leg pain so I will go look at your post and see if anything stands out to me about Emily’s experience and yours.
I hope we can try the Opdivo and ippy again. Thank you for sharing your story too.
Erica
-
- December 28, 2018 at 3:15 am
Hi Celeste,
As April stated, thank you for your reply and great information. When you are sitting with the doctor, you think you have all your questions answered but then you get home and wonder, “why did we not ask about radiation” or similar questions. We trust our doctor and based on your reply, it seems we are following protocol right now with the steroids so I am really hoping her bloodwork flattens out a bit so that we can advocate for the combo treatment again. We have all hands on deck to make sure we are not missing anything. This is all surreal. Appreciate the links to the clinical trial site and the research posted on your blog. Right now I am very curious if radiation could help in the interim as palliative care but also for the possible other benefits you mention.
Many many thanks,
Erica
-
- December 28, 2018 at 3:14 am
Hi Celeste,
As April stated, thank you for your reply and great information. When you are sitting with the doctor, you think you have all your questions answered but then you get home and wonder, “why did we not ask about radiation” or similar questions. We trust our doctor and based on your reply, it seems we are following protocol right now with the steroids so I am really hoping her bloodwork flattens out a bit so that we can advocate for the combo treatment again. We have all hands on deck to make sure we are not missing anything. This is all surreal. Appreciate the links to the clinical trial site and the research posted on your blog. Right now I am very curious if radiation could help in the interim as palliative care but also for the possible other benefits you mention.
Many many thanks,
Erica
-
