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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mrsaxde's picture
Replies 10
Last reply 9/10/2018 - 4:51pm

This week was my third TIL trial follow-up. Based on what we had heard up to this point, we went into the appointment with the doctors yesterday with a good deal of concern about what we were going to hear. At my last follow-up in July Dr. Goff had told me that there was still a slight chance the treatment could begin to work, but she didn't sound very hopeful. In fact, I was given the option of taking myself out of the trial or letting them monitor me for six more weeks. Since things were stable I agreed to go to the next follow-up. But going through another round of nausea and vomiting over the past couple of weeks had me convinced it would be back to Dr. Sharfman to look for another trial or treatment.

When my new research fellow, Dr. Seitter, entered the room she didn't look like the bearer of bad news. I have not seen the radiologist's reports on my recent scans but this is what Dr. Seitter told me: My brain mets that were treated with radiation are resolving. The multi-lobar mass in my chest is slightly smaller according to RECIST criteria. One part of it is mainly unchanged, although a little rounder in shape now when it had been oval. The other lymph node that makes up the mass has shrunk from about 7% over baseline measurement, where it was in July, to now about 0.5% over baseline. And, as Dr. Goff pointed out, there is nothing new anywhere.

So I'm still at stable disease, but it looks like there's a possibility that things are going to turn in a positive direction. Dr. Goff said the lab is still working with my cells to try and find why my cells aren't providing a more robust defense.

And there's this...

In my last post, after my July follow-up, I mentioned that it seemed to be time to add some complementary medicine to what the doctors are doing. I'm a Delaware medical marijuana patient and I have been taking Rick Simpson Oil according to his dosing instructions. I started the day I came home from my July follow-up and have been taking it daily. I don't know that cannabis oil has helped this process in any way, shape, or form, but it certainly can't hurt. And it's an interesting coincidence that after over a year of my tumors slowly growing through two trial treatments now after six weeks of cannabis oil they appear to be shrinking. I'm not ready to draw any conclusions, yet.

And I'm not advocating for anyone else to abandon medical treatments for Rick Simpson Oil exclusively. Do what your doctor tells you. But if you live in a medical marijuana state, you might want to look into this as another part of your arsenal.

-Bill

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MelanomaMike's picture
Replies 6
Last reply 9/10/2018 - 10:47am

Hi family, just checkin in with ya's, i have something to share wich may be of help to you, for about 4 months or so, since my 1st infusion of the combo (Yetvoy/Opdivo) & as iv told you, extreme pain in knees, left leg & foot swells "most" the time, i did have that very same leg's Lymphnodes removed (2008), not all but some so, iv had swelling anyways but never my foot till the Combo..
Anyways, i "Finally" got my butt over for the Compression Sock fitting (passed the buck for like 2 months)and the next day my knees are great! No pain! I know it works for swelling iv used it before back when i had the surgery but, this is amazing! (Knock on wood)...is it a coincidence? That im just having a few good days? Hope not...thought id share...Mike (PS: Tommorow is Opdivo #5, the first without Yervoy...

Im Melanoma and my host is Mike..

www.covvha.net

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Savymoo23's picture
Replies 6
Last reply 9/10/2018 - 8:50am

My labs came back, I guess I have an elevated liver count. Not a super high count (around 58) and he said he likes it more around 35. He said usually they would chalk it up to a fatty liver but he said he doesn’t want to take the chance and it ordering a pet scan. We shall see. Has this happened to any of you? I’m not currently on any treatments. 

Savannah Price

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CallMeKate's picture
Replies 14
Last reply 9/8/2018 - 1:01pm

So when I was diagnosed in May with 1B, my dermatologist said that I'd need to have a skin check every 3 months for the next two years, every 6 months for the following two years, then annually after that.

At my appointment yesterday, he said that I could do every three months for the next year, six months for the following year, then annually.  Thoughts?

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Anonymous's picture
Anonymous
Replies 3
Last reply 9/6/2018 - 3:25pm

My daughter had a punch biopsy yesterday.  Does anyone know how long it takes to get results.

 

Thank you.

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mmmm's picture
Replies 12
Last reply 9/8/2018 - 8:01pm
Replies by: Mat, mmmm, ed williams, Mksews, Sissi, Linda5, Anonymous

hello everyone! 

ive just started the taflinar/mekinist combo as stage 3b for a year in Canada and was hoping to get some advice from your collective experiences. I just started a week ago, so no side effects yet but have been warned by my doc and pharmacist, and have read through most of the posts on here regarding fevers, rashes, etc. 

one of the main things im wondering about is how this will affect my work abilities. I've already had to take a lot of days off for appointments/ surgeries, so Im just wondering in general how long fevers last, and how long they take you out of it, so to speak. Or if theres no general guideline and its individual.

additiionally i was hoping to go on a week long vacation (within canada) at the start of october, and am wondering if this is a terrible idea or not, given that from what i've read, side effects usually start around the three week mark. 

i've also experienced a pretty constant but low level of nausea since i started the doses, and my pharmacist has suggested gravol, but that always puts me to sleep, so i was wondering if anyone has found an effective way to deal with this.

thanks in advance, hope everyone is doing well! 

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Scooby123's picture
Replies 11
Last reply 9/10/2018 - 1:42am

Hi all can anyone give me advice or had same issue with keydruda and liver count up. Had bloods today consultant called and said liver count up so no treatment Monday . Check bloods next week if still up steroids. 

Anyone had to deal with same issue and what was plan for you be much appriciated.

 

scooby❤️

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jagstter's picture
Replies 4
Last reply 9/11/2018 - 9:46am
Replies by: jagstter, bjeans, MarkR

Well, there's no getting out of it; I have to go to MAYO in AZ for a (partial?) nephrectomy, this month. The big question is - renal or mel? No one knows & I'll have to wait for pathology. The good news is, I know I'll have excellent care & compared to the local surgeon's assessment, they won't need to remove a rib to get to the 4 CM tumor, which infringes the vascular system @ the renal pelvis. MAYO hopes to spare a part of the kidney, especially w/ my melanoma but won't know until they're in there. Prayers appreciated, as I had not wanted to travel for major surgery but feel it is the right decision.

Separately, still recovering from WLE & reconstruction on my right ear from an invasive basal @ the helix, extending down almost the length & width of my thumb! Ugh ... I knew there was a reason for growing out my hair ;-)

Praying for Celeste & all of my mel Family ... stay strong & keep fighting!

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Anonymous's picture
Anonymous
Replies 3
Last reply 9/9/2018 - 9:28pm
Replies by: Anonymous

Hi everyone. Last year I went to the dermatologist for the first time because I noticed a mole that looked on. She biopsied it and it came back moderately atypical. After she went back in to completely remove it and surrounding margins, I got a full body check and everything was fine. 6 months later I went in and had another mole checked that I thought was suspicious. Mole biopsied, moderately atypical. I went back again a month later for another suspicious mole, moderately atypical. All removed with margins. I had her look at another mole that according to the nurse, was fine. I started seeing different dermatologist 2 weeks ago because my other dermatologist was not using a dermascope. She biopsied the same mole that my other dermatologist said was fine, and I received results today that the mole is severely atypical. The time between the two biopsies on the same mole is only about 2 months. Could the pathologist have made a mistake the first time? Going from "fine" to severely atypical is a pretty big jump. Or is it possible for a mole to become severely atypical that quickly?

 

My other question is, is it common for people to have many atypical moles (even severely atypical) and never have melanoma. I am absolutely terrified of getting it one day. I am only 25 years old. I feel this is young to have so many atypical moles already (4). However, I am fair-skinned, though not white as a ghost, and I have over 100 moles. I also tanned indoors for 2.5 years but never in the sun. Indoor tanning has been my greatest regret. I wish I educated myself on the matter. People tell me that it is great that I am being proactive but I also worry that my derm and I will not catch melanoma especially because I have a lot of odd looking moles that happen to be just normal moles so it is difficult to pick the "ugly duckling."

 

I'm sorry I put a lot on this post! It is my first time on this forum, or any skin care forum. I'm just very nervous and this is all fairly new to me. It seems that severely atypical moles are something to worry about.

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DocPain's picture
Replies 2
Last reply 9/10/2018 - 3:54pm

If this is something that has been discussed recently, forgive me, I'm not on here often. Sixteen months ago I was diagnosed with Stage IV in my lungs. Scattered small spots and two large spots. I have had the 4 ipi treatments and 25 nivo treatments and most everything is gone. The one lingering spot just doesn't want to go away. It started at 35mm and is now only 5mm.

However, along the way I've had 2 week-long stays in the hospital. Both times for cognitive issues. The first time the official diagnosis was viral encephalitis, I don't know what the diagnosis the second time was. My doctor said, in his words, I was in zombie land. For 3-4 days both times I was a functional vegetable.

 I know these are potential side effects, and potential late effects as well. Has anyone else experienced this? Do the late effect occurrences diminish with time? Is there anything out there to minimize this?

Doc Pain

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eric w's picture
Replies 46
Last reply 9/11/2018 - 10:00am

Hi all,

 

Celeste asked me to post this from her blog on her behalf in regards to how she was doing. She asked me to copy and paste this from her blog.

 

This is a short update for my friend SUPER WOMAN Celeste. On her behave I can say the past few days have been difficult,but she handles it all with strength and determination to get better. Picking up from her post. Appendix removed 8/30 and it was found to be cancerous. Most likely goblet cell carcinoma. This resulted in appendix and 1/3 of her colon being removed. The good news is they were able to get clear margins. The not so good news is she developed a ileus couple of days ago. After being miserable and having a distended stomach along with vomiting this am a NGT was placed. Although the tube is uncomfortable, it has brought great relief. She has had over 2 liters of stomach contents output today!!! Hopefully tomorrow her pathology report will be back. Please pray with me that she has a speedy recovery AND the path report tells us no further treatment is need. Stay strong Celeste, you got this!!

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denimike's picture
Replies 3
Last reply 9/7/2018 - 9:44am

Hi All,

I'm new to this board. Actually, the original Melanoma Patient's board (back in 1997 era) helped me a lot 21 years ago. 

My wife had an arm lesion removed, with subsequent sentinel lymph node biopsy in 1997. It was a 1.5mm, in what today would be called Stage 2A. 

We thought all was behind us when we hit the 10yr milestone. Recently, a small (0.6cm) spot was discovered in the brain stem. This has not yet been confirmed as a metastasis. 

My questions involved guidance on taking the next steps in diagnosis, treatment and prognosis. 

- First, has anyone had/heard of such a late onset met 21 years later? 

- Spinal tap recommended by oncologist

Is this the proper next step to diagnose? 

Anything to be concerned about the test?

-  PET scan was also recommended

Does this sound reasonable in parallel with the spinal?

- Treatment (maybe getting ahead of myself)

What questions should I be prepared to ask the Dr based on results from tests above?

What treatments are available?

- Prognosis - it's been 21 yrs since I've looked closely into this disease. 

What can we expect as a prognosis for this type met?

 

Thanks for any info provided. I know this board has been a great help to many people. 

 

 

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Jubes's picture
Replies 8
Last reply 9/8/2018 - 7:54pm

Hi friends

 

has anyone used humira for joints and inflammation?

My rheumatologist is suggesting it now after my CRP count got to 35. (Normal range 0-5)

thanks

 

anne-Louise 

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NEDnotDead's picture
Replies 8
Last reply 9/5/2018 - 10:26pm

Anyone else have multiple blue spots appear on skin after Ipi/Nivo treatment?  I had at least 30 appear after 1st treatment and after the 4 combos, now have a white halo around the larger spots.

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MarkR's picture
Replies 9
Last reply 9/6/2018 - 4:28am

Hi All

im not really a poster but am an avid reader as I find the posts and comments really help me get through this.  I wanted to post an update as my experience has been a little unusual and I hope it might help others in a similar situation.  My background thus far:

2005 - 1.2mm Melanoma just above elbow with WLE and Negative SLNB

2016 - Intransit Met in scar tissue and upgraded to SIIIB

2017 - New met in deep in arm with another surgery and into Checkmate 095 study for adjuvant Ipi/Nivo.

2018 - Start trial with doses every 2 weeks.  Completed doses of Ipi/Nivo then Nivo then Nivo then Ipi / Nivo before a further unresectable Met in scar tissue and new met on chest takes me off the trial.  Moved to metatastic dose and 2 more Ipi/Nivo infusions.  After 2nd dose I experienced headaches eventually leading to a 3 day hospital stay with enlarged pituitary gland and hepatitis of the Liver.  Moved on to steroids and immunosuppressants which took 4 months to get my Liver under control.

Yesterday I had my CT scan which showed no new mets and shrinkage of the Met in my arm!!!

Doctors have taken the view that I don’t need any further Ipi or Nivo as my body is now dealing with the Melanoma and I am onto watching and waiting and reserve the Nivo for any future progression if it comes to it.  The relief that the immunotherapy is working is immeasurable and I can only pass on my best wishes to everyone on this site and hope that you all see improvements with your meds and get good results.

 I am in the UK being looked after by Dr Larkin at the Royal Marsden.

Mark

 

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