MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Amanda's Mom's picture
Replies 1
Last reply 12/11/2018 - 5:56pm
Replies by: Bubbles

Amanda has decided to participate in the above trial.  It is at Phase 1b.  IDK if I agree with her decision, but from what I understand, there really aren't any options left.  Has anyone been on this?  Thank you

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AMcReader's picture
Replies 2
Last reply 12/11/2018 - 8:23pm
Replies by: cjm22, VinceMart

Hi all,

I’m just starting to get hit with side effects after my first dose of Ipi/Nivo and am hoping some of you can weigh in on whether or not you experienced anything similar. I also have a note into my oncologist but I haven’t heard back yet. I did seven monthly doses of Nivo and handled them very well, with minimal side effects so these new ones (although expected) are throwing me for a loop.

For the past few days I’ve been experiencing a low-grade fever (never over 100) and been cycling through chills when it hits and then several hours of intense sweating when it breaks. It’s been a little tough to manage. Has anyone else experienced this? Was there anything you found helped to manage these intense cycles?

Today, after having middle of the night chills pretty bad, I woke up with a pounding front of head headache, which now also includes a neck ache where my head hurts more when I move my neck. Anyone else experience this? Any thoughts on what it might be caused from? I’m trying to think that it’s only side effects but of course my brain is jumping all over the place with assumptions.

I also feel like I’ve been dealing with being endlessly thirsty and also having dry eyes. Not a big deal but I hadn’t read about this as a side effect. Maybe it’s cauaed by the sweating?

Any insight you all who have been in the Ipi/ Nivo battle can provide would be helpful.

Hugs to you all.

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two shrinking lung mets. Started Opdivo 4/16/18.

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sing123's picture
Replies 12
Last reply 12/11/2018 - 10:21pm

Can anyone recommend a book or other literature about adopting an anticancer diet?  I see that some of the research talks about certain foods as being protective against for example breast cancer but I haven’t come across anything specific to melanoma or other skin cancer. Still I suppose that researchers agree that certain foods are thought to generally have anti-cancer qualities.

Any thoughts on this?

Cindy

Diagnosed April 2018; Stage IIIb; 1 excision on head, started immuno (Opdivo) May 2018; new spots Oct. 2018; second surgery; about to start radiation 

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Bubbles's picture
Replies 7
Last reply 12/11/2018 - 8:18pm

I wasn't planning to share these posts here.  But, given the response I have had from the first....and the incredible resonance I felt with the contents of the second....I thought....

Well ~ here they are.  

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/12/sunshine-in-russian-novel.html  

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/12/scars-are-more-than-skin-deep-love-that.html  

I know many here have stuggled with such things. Be strong in the knowledge that you ARE worthy.  (Even when we don't feel like it.)  Much love, c

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MelanomaMike's picture
Replies 17
Last reply 12/11/2018 - 8:48pm

Hi guys & gals, im truelly sorry so much time has passed since ive wrote, have "some" good news, i believe i mentioned me having a pair of CT Scans, one of my head the other my chest {lungs}.....my head was clear {yay!  about freakin`  time a scan was clear, first clear one since my Mel journey began!} and, well, the ol` CT of the lungs is yet again "bitter/sweet", the bitchass Mel Monster is still growing, was 5.4cm in September {comparison to} now its 5.7cm and all other tumors havnt grown still!! its such a trip how "one" out of the bunch is totaly defying treatment, really wierd...And thanks for the "vote" of whats a good "med" for Nerve pain thats not a narcotic, Gabapentin was mentioned the most by you all & i am now "2" days into my saturation period and so far so good, i think its gunna work for me better then pounding down 3 thousand miligrams of Naproxins {Ibuprofins} every day, cant be good on my inards haha...Surgery still set for Dec17th, im gunna do it this time, youll see....Take care ya`all, love ya guys...

Im Melanoma and my host is Mike..

www.covvha.net

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Gene_S's picture
Replies 0

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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ed williams's picture
Replies 3
Last reply 12/9/2018 - 8:47pm
Replies by: Bubbles, Linny, lkb

Tried yesterday to send a reply to your comment on the spam post Celeste but system tells me things must be approved first by some one???? So not sure if this will be posted, sending it Sunday Dec 9th AM. Ed

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RichInLife2's picture
Replies 4
Last reply 12/8/2018 - 4:32pm
Replies by: Anonymous, Johnjk04

Hi folks,

I thought I would reach out to anyone who is currently a patient at Smilow Center at Yale New Haven Hospital. I'm thinking of transferring my treatment to from Dana Farber to Smilow. I'm not dissatisfied with Dana Farber, but I'm finding that the distance is getting to be too much for me. I live in eastern Connecticut, Yale would be significantly closer for me. I thought that I could handle the travel for 1-2 days a month for scans and treatment, but I'm finding that when it comes to managing side effects, it's not really practical to have them managed out of Boston.

So, I'm asking for anyone for their experience at Smilow:

Are you happy with the treatment there?
Do you feel like they have your total health and welfare in mind and not just your tumors?

Do you feel like the various doctors communicate well to you and to each other?
Do you spend a lot of time waiting when you go there?

Do you get the results of your scans right away (same day) or do you have to wait until your next appointment?
Is there anything else you wish you knew before you signed on for treatment there?

Please feel free to post here or PM me with your responses.
Thanks,

Rich

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mrsaxde's picture
Replies 4
Last reply 12/11/2018 - 6:16pm
Replies by: VinceMart, mrsaxde, Bubbles

Yesteday I visited Dr. Sharfman to see what he thought I should do now, after coming out of the TIL trial. He mentioned two possible trials to me, one that he said looked very promising, that he referred to as "anti-IL8."

I looked for info on that trial when I got home, and found plenty of stuff about IL8's role in the tumor microenvironment, but I couldn't find anything about a trial on ClincalTrials.gov. Does anybody have a link or any info on a trial involving a combination treatment of an anti-IL8 antibody and nivolumab? Thanks in advance.

-Bill

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Anonymous's picture
Anonymous
Replies 2
Last reply 12/6/2018 - 9:42pm
Replies by: lkb, sing123

Thank you all so much for your responses to my query on radiation for head and neck. My local radiation guy wanted to do both, but when I went to Mayo in Jax, Dr. Richard Joseph (who sits on the national board and participates in establishing protocol for melanoma treatment) advised against radiation to the neck, saying that it would be too aggressive at this time, especially as my last PET scan did not show cancer. So, I am going forward with the radiation to my head. The tech described it to me as the electron type, which is neither photon nor proton. 

I am reasonably literate, but there is so much to learn and research in navigating one’s care as a patient! 

I really appreciate the feedback from you all. And am very happy that I got a second opinion. Now I feel like I can embrace the treatment. 

 

Cindy

Diagnosed April 2018; Stage IIIb; 1 excision on head, started immuno (Opdivo) May 2018; new spots Oct. 2018; second surgery; about to start radiation 

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Replies by: kcmtnbiker, Toby0987

I had my appointment today and the derm just looked at the mole and then looked at it with those glasses things on she diagnosed it as an atypical Nevus. Is it possible she’s wrong or am I just still freaking out for no reason

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Amanda's Mom's picture
Replies 2
Last reply 12/6/2018 - 10:48pm
Replies by: WithinMySkin, sing123

Amanda has been on all of the "protocol" treatments.  She has done really well on the Cotellic and Zelboraf combo, until now.  Multiple tumors in the lungs and almost double in size since September.  We see the Dr Monday for the "plan".  Possible trial..    I am trying to stay positive, while my daughter feels that she is starting these next months as the end.  She also has a new pleural thickening. I can't make sense of that.

Thank you

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lindy303's picture
Replies 6
Last reply 12/8/2018 - 1:14pm
Replies by: lindy303, MMH, AN8, Janner

Hi,

Recently diagnosed with invasive superficial spreading melanoma. The Breslow depth is <0.8, but MR is 1.  Has anyone on here had a sentinel node biopsy with a thin melanoma?  I realize it's not normally indicated, as the risk of a positive SN is about 5%.  But still, that 5% makes me worry! 

 

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