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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MelanomaMike's picture
Replies 7
Last reply 11/26/2018 - 8:09am

Quick question guys, since were all in the same boat with side effects from Immunal Therapies and other meds that may cause pain, not to mention our cancer itself, what medication that is NOT a narcotic that is good for deep "Nerve" pain, i take Naproxine 500mg and apparently thats the highest Kaiser will go in milligrams..Any leads would be appreciated, im waiting on a call from my Dr. to ask, another thing, and maybe Kaisers different then most Ins., isnt our Oncologist sappose to deal with pain management? or is it our Primary Doctor? {Internal Med Doc} just curious...thanx guys!!

Im Melanoma and my host is Mike..

www.covvha.net

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MelanomaMike's picture
Replies 2
Last reply 11/23/2018 - 3:34pm
Replies by: Scooby123, SABKLYN

Hi ya"ll, just a quick note to give thanks here on Thanks Giving Day/Night to the folks who run MRF {A Big Salute to you guys!} and especially to my fellow brothers & sisters who are all right there in the fight with me, and to the God Sending "Care Givers" who take take care of them, {us, me} whether its our Husbands, Wives Aunts & Uncles, Brothers & Sisters or appointed by Palliative care and or Hospice care, THANK YOU!, and not to leave out our Care Team, our Oncology Team that are trying their damnest to cure or slow our shared disease's growth....{Melanoma! i hope you suck on a Turkey bone & Choke on it!}..Take care...

Im Melanoma and my host is Mike..

www.covvha.net

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Coragirl's picture
Replies 3
Last reply 11/22/2018 - 10:09pm

I hope all of you who celebrate Thanksgiving have a wonderful day with family and friends. I am thankful for all of you every day. 

Amie Taylor

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Amy83523's picture
Replies 2
Last reply 11/22/2018 - 1:08pm
Replies by: Amy83523, SABKLYN

The doctor took a biopsy of a weird brown me on my back. She said Mose will not remove it. She said it’s on the surface has anyone else had something similar? 

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SABKLYN's picture
Replies 3
Last reply 11/21/2018 - 8:10pm
Replies by: lkb, ed williams, sing123
sharonlynn210's picture
Replies 4
Last reply 11/25/2018 - 4:48pm

My son'ds dr told me that they will be stopping his Keytruda when he reaches 1 year.I am worried about that.Is that normal process?

Sharon

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sing123's picture
Replies 4
Last reply 11/26/2018 - 10:34am
Replies by: sing123, lkb

Hi everyone! I've been reading through some of the posts and am so grateful for this group. This is my first post on here. 

I have been diagnosed with Stage III(c) melanoma on my scalp. Two of my 7 biopsied lymph nodes tested positive so I had an excision and am on Opdivo and just finished my 7th treatment. 

At my last dermo appointment, she found two tiny spots of melanoma. I had those excised and the surgeon also found another small spot. All of these are on the scar line of the original site and excision. 

The doctors say this may be residual melanoma (emerging and too small to detect and remove at original surgery) and differ as to whether or not the Opdivo is working. 

Has anyone had experience with this? 

Thanks so much and a very very Peaceful and Happy Thanksgiving to all of you!!!

Best, 

Cindy

 

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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mrsaxde's picture
Replies 2
Last reply 11/24/2018 - 8:45am
Replies by: sing123, AMcReader

I hope everyone is preparing for a great turkey day (if you live in the US anyway)! Food, football, and family.

After being out in the elements for our last soccer game of the season two weeks ago I spent most of the next 14 days fighting what would have been a mild cold, except my lungs are so damned compromised these days. I've developed a wheeze when I breathe and now I have an albuterol inhaler as part of my arsenal.

Next week it's off to Bethesda again for my next follow up scans. Hoping for the best but this time just before scans is always nerve wracking. The nodule below my navel has gotten a little larger  and I don't know what they'll have to say about that. Personally I'd like them to go in and take it out, but I know that won't happen unless I come out of the trial. One good thing is that when I went to walk-in care they did a chest x-ray, and it didn't show anything new in my chest when compared with the last CT images they had from NIH. Of course an x-ray is not a CT, so we'll see what that one shows next week.

So it's pins and needles time until I hear from my NIH docs a week from Thursday. At least there's turkey to soothe me for a few days. And mince pie.

Have a wonderful holiday!

-Bill

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Anonymous's picture
Anonymous
Replies 4
Last reply 11/26/2018 - 10:21am

Are there any members here who have been stable for a long period of time? For how long?  Would love to read some encouraging stories.

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AMcReader's picture
Replies 6
Last reply 11/21/2018 - 8:04pm
Replies by: AMcReader, GeoTony, Edwin

Ok, I got the results of my first PET scan and I’m afraid they are really bad with very high SUV uptake in my lung tumors (none anywhere else though!!!). Have people still had a response on immunotherapy when tumors had a high SUV uptake? I’m about to start the combo and I’m feeling like there is something more I should be doing or pursuing. Should I be pushing to have the nodule with the greatest uptake taken out? Any advice?? I’m getting so anxious...

Here is the part of the path report, I’m worried about: 

- Hypermetabolic mass noted within the right lower lobe of the lung with maximum SUV of 15.4. This abuts the pleura. Hypermetabolic right hilar mass with maximum SUV of 9.2. 

I’d be really appreciative of anyone who can help me understand it and weigh in with thoughts and opinions.

 

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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Rcollins1863's picture
Replies 2
Last reply 11/20/2018 - 8:12pm
Replies by: MelanomaMike, marta010

Good morning,  

I was wondering has anyone’s stage 1 come back in another area or spread to other organs.  I have multiple nodules in both lungs (haven’t seen specialist to know if malignant or benign yet). But I’m concerned it could’ve spread to my lungs.  Not sure what to think. I’ve read all the stage 1 materials on this sure. But my dermatologist did not test nearby lymph nodes so it makes me more concerned. 

thanks in advance for any responses

DebbieC

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MelanomaMike's picture
Replies 8
Last reply 11/22/2018 - 3:10pm

How ya doin` Ladies & Germs?, im doing ok, a little more "nerve" pains then normal, is it the Nivo, is it my lungs, is it something "brewing" somewhere else? i do have a CT {with & without contrast} for my freakin` "Head", im sure iv told you, im severly "Claustrophobic" and have not done an MRI or PET in some time, Adavans no longer work & my anxiety level has gone way extreme, it played a roll in my backing out of the surgery, i know it did..CT scans are no sweat, a big ass Doughnut, 5 minutes tops & im outta there! i just cant beleive my Onco didnt order one sooner for the ol` head knowing my anxiety of MRI`s and such, "I" didnt even think to ask all this time that have gone by till i saw that 2nd opinion Onco remember? it actually hit me like  ton of bricks while i was waiting to see him! "Why hasnt she ordered a CT for me if im that crazy about it? i did ask her why, and shes right, CT`S arnt the best of scan pertaining to the Brain, and is very limited but, "i" then asked her "Will It Light Up Any Tumors If There Is Any? she said "well yes" & i just kept my mouth shut...it just made me more upset. Ive learned the chances of tumor travel from lungs to brains is high...in the past month iv had ringing in both ears, i feel "puffy" in my head & a bit of neck pains, no head aches, just minor neck {back of head, in neck area and my nose will leak clear, runny snot if i bend over! just one nostrol though haha...So, of course we think "everything" is cancer hahah...So, i have my CT this Wed at 3:30pm, hopefully Friday ill have results...Take care guys, all my love yer way, i did my best puttin in my 2 cents & replied to alotta post`s from folks, i just havnt been myself...

Im Melanoma and my host is Mike..

www.covvha.net

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scrapnmom's picture
Replies 2
Last reply 11/20/2018 - 8:45am
Replies by: marta010, MelanomaMike

Hello (I am not sure my previous post went through),

My husband has Stage IV nodular melanoma and has been put on target treament as the immunitherapy did not worked, acted like a catalyst. He has cancer in lungs, nodes, liver, sternum, vertebrae and kidneys. His LDH was 1103 when cancer was at its worst but came down to 179 in October while on the targeted meds, the doc cut his dose down by a pill to see if it would help with side effects. His LDH went from 226 last week to 328 this week. She put him back on the full dose this week. She has told us once these stop working the only thing left is a trial IF we can find one. She also said she wouldn't put him back on the immuniotherapy as he blew through it and would not stop and start the targeted. She told us not to worry about the LDH number but she is more concerned about the liver function numbers which are improving. The most recent scans show the cancer has regressed but there is still a great deal present in his body in his nodes, lungs, liver and bones. He actually feels really good.

The yo-yo effect on our emotions is horrible and it is really taking a toll on our kids. It is just such a horrible disease. I would appreciate any advice, encouragement or words of wisdome and of course, prayers are always welcome.

Thank you for listening.

Kimberly

Kimberly

Caregiver of spouse  with stage IV nodular melanoma with mets to liver, lungs, kidneys, bones and nodes. 

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BlessedForLife's picture
Replies 11
Last reply 11/25/2018 - 1:15pm

Hi All,

I completed my combo Ipi/Nivo treatment at the beginning of Oct. About 2.5 weeks later I started having the same type of gastrointestinal side effects I did when I first started treatment.  I hadnt had issues since going off Ipi 7 months ago.  

My Dr. believes it’s related to treatment so has put me on a MedPack.  I know side effects can develop at any time, or even after treatment, but wondering if anyone has had an experience like this?  Or problems going off immunotherapy.

Thanks!

 

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