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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Anonymous's picture
Anonymous
Replies 8
Last reply 5/23/2017 - 9:24am
Replies by: AliCat61, raun cesar, SABKLYN, Anonymous

Stage 4 patient here. Each of my 3 radiology reports at current treatment center have described "nonspecific bilateral punctate nodules" in the lungs on CT, but these are not measured like the nodules in other organs. They are "stable" in the latter 2 reports. Has anyone had similar nodules? Did they resolve along with other tumors? What is the likelihood that these are tumors at all? Is there any way to figure out if they are cancerous?

What is the significance of the adjective "punctate"?

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MovingOn's picture
Replies 3
Last reply 5/23/2017 - 3:06am

I am facing the situation where my side effects from Ipi/Yervoy are being suppressed by prednisone. My side effects are hypophysitis and sinusitis. Will the prednisone return my immune system back to a pre-Ipi state or has my immune system been changed permanently? I hope that I benefit from the Ipi infusions but I also don't want my pituitary to swell again once the prednisone is tapered.

Can anyone share insights on the permanent immune system changes from Ipi? Or if prednisone will permanently direct my immune system back to not attacking my pituitary and sinuses?

(there may be other side effects I'm experiencing which have not been diagnosed, e.g. Mild Neuralgia. Hopefully these won't come back/progress when prednisone tapers.

Thank you!

Danny

Diagnosed Jan 2017 (unknown primary). Surgery Feb 2017 (Speech impediment resulted from ad-hoc submandibular gland removal during CLND). Ipi started Mar 2017 - ended May 2017 (Hypophysitis)

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jenny22's picture
Replies 9
Last reply 5/22/2017 - 11:34pm

Hi-

I have been hoping we might hear from jamie and or Josh.....

I sent jamie a PM and have not gotten any repsonse...

Has anyone been in touch with or heard from either of them?

Last from josh was he was recovering from TIL and feeling pretty weak....and last from Jaime was from his wife, when were they are at MDA.....nothing since from either of them that i have seen.

Hoping they are ok.

Anyone know anything?

thanks,

jenny 

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MindyD's picture
Replies 27
Last reply 5/22/2017 - 3:11pm

Hi all,

New to the forum, as I was diagnosed earlier this month.  It's been a crazy couple of weeks, and I have learned a lot from stalking this forum.  ;-)

I am one week out from having the WLE and SLN biopsy, which removed 5 axillary nodes - all negative.  Yay!

This puts me at at Stage IIa.  My surgical oncologist decided to submit the tumor for a new test that they've only been doing for about 6 months.  It is called DecisionDx - Melanoma, performed by Castle Biosciences, Inc.  It is a gene expression profile test...  Quote from the site:   "...a molecular test which has been shown to identify tumors at high-risk for metastasis more accurately than the factors currently used by doctors, including the depth of the melanoma (Breslow's thickness)".

My doc says that if it comes back in the Class 2 (high risk) category, then there is a better argument to have further tests/scans to check for spreading, which insurance is more likely to cover.  He also said risk for recurrence would be higher, so we might go ahead with adjuvent treatment.

I am thrilled that something like this now exists, as I did not like the idea of the "wait and see" approach for the next 5 years.  Especially since it had been 6 years since I had seen a dermatologist prior to having this mole removed.  Who knows how long it's been there...  and I've heard several examples of Stage 2 skipping 3 altogether and goind directly to 4. 

From the studies I've read, the accuracy of past patients has been highly accurate.  I should get results in a couple weeks.  In the meantime, I tried to find some threads about this topic, to no avail.  Has anyone had this test done that would like to share their experience? 

Thanks!

- Mindy

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               I need some advice as I have no experience with cancer...until now. My Dad had a lesion on his arm biopsied and the pathology report showed melanoma. Apparently it is not the primary lesion and they did another biospy of a lesion on his face and that came back with the same results. He had a PET scan and MRI of the brain this week and the surgeon said that the brain was clear but he has two spots on his lung, one of which they "are very concerned about." Which I assume is cancer.    

                  My question is about what to do next. The dermatologist sent him to this general surgeon in the Jacksonville, FL area who ordered all of the scans and is going to call on Monday to talk about doing a biopsy.  We also have an appointment at Moffitt Cancer Center in Tampa for June 5th and will meet with an oncologist and surgeon on the same day. I am wondering if we should wait and have everything done at Moffitt or have the surgeon do his thing here and then follow up at Moffitt. I feel like my dad should have it done at Moffitt since they are the best cancer center in FL, but I also feel like we have been waiting for all of these appointments and tests and the weeks keep ticking by... I just worry that the longer we wait the worse it will get (and it's already pretty bad).

                 So if anyone has any advice I would appreciate it. I feel lost trying to navigate through the process. Thank you.

 

Catherine

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Anonymous's picture
Replies 4
Last reply 5/22/2017 - 1:13am
Replies by: Anonymous, messedmelanocytes, Janner

Hello,

I had melanoma last year and have had at least 10 severely atypical moles removed and lots of moderate and mild and some benign moles too.  I have tons of moles unfortunately.  

I am seeing a new doctor who has been removing moles that are moderately dysplastic that do not have clear margins.  They say not to worry about those but I can't help it as my previous medical center removed more skin for moderately dysplastic.  This new cancer center only removes more for severely dysplastic or melanoma.  

I am a young mother in my early 30's and don't want unnecessary stitches but want to make sure I am doing everything I should be doing.  

Thank you for your guidance.

Gina

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jennunicorn's picture
Replies 14
Last reply 5/21/2017 - 11:42pm

I need some advice about some allergy medications,,,

When I started this whole immunotherapy journey, I didn't have "seasonal allergies" or any kind of allergy. But right after my first infusion ever of Ipi.. in December 2015.. my nose was all runny and plugged up for a day. This happened after every infusion, and now a year and a half later and on Nivo, my newfound allergies have become difficult to control. I was taking Claritin every morning and that was helping a lot. I recently switched to Zyrtec because it seemed the Claritin stopped doing its job. But, I'm continuing to have at least 2 days a week of full on allergy attacks.. going through 2 boxes of tissue in a day!

So, if anyone else who has dealt with major "seasonal" allergies has any recommendations for OTC meds to try or if I should see an allergy specialist.. please let me know.. I'm getting reaaaaallllllyyyy tired of blowing my nose!

Thanks guys :)

Jenn -  IIIC - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

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dmturner's picture
Replies 6
Last reply 5/21/2017 - 8:59pm
Replies by: BrianP, dmturner, Anonymous, UBContributor, Bubbles

Tomorrow I will be starting a clinical trial with the 2 above.  A bit nervous.  I did 3-10 mg Yervoy when stage IIIa, but progressed.  Then started Opvido/Yervoy Jan 5th did all 4 treatments.  Had a PET scan and progressed to lungs and effected lymph nodes had double in size.  Plus, I have intransit lesions all over my right foot.  The primary was on the bottom of right foot.  I am feeling hopeful.  It has been 6 weeks since I had any drugs in my body and I just feel like it is growing and growing.  I can see it daily on my foot.

Anyone else done or doing this trial?

Donna

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SOLE's picture
Replies 1
Last reply 5/21/2017 - 7:53pm
Replies by: Ed Williams

Have any of you ever had, through blood or tissue, your melanoma tested against the available immunotherapies (or chemos) like in the RGCC tests or Maintrac for exmple?

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Anonymous's picture
Anonymous
Replies 0

Does anyone feel like waiting is sometimes the hardest part?  I had a CT scan last week and won't get results until Monday.  I'm also waiting for follow up MRI on the 31st.  This will be the first one post radiation for a brain met.  This is also the first CT since being on Nivolumab only from Ipi/Nivo combo.  I'm wondering if it is working or if I should be talking to them about looking at other treatment options.  Should I ask for a PET scan?  I've only had CT scan and I understand PET shows metabolic changes.  Thoughts?

One last thing.  The hair loss post radiation was a big blow.  I didn't expect it to bother me so much.  I'm feeling much better now that I've cut my hair (think old lady cut) and have an appointment to get a wig.  I'm hoping it grows back but again the waiting.  

Have a great day.

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Bradley75's picture
Replies 10
Last reply 5/20/2017 - 10:24am

Just wanted to share some good news.  It has been a long time since I have been able to say that.  I had one dose of the combo back in January and the side effects wiped me out.  Once I was off steroids and beta blockers, they decided I was stable enough to try Pembro.  Monday the 15th was three weeks after my fourth dose.  I had my first scan and MRI since the December scan that moved me to stage 4.

The results indicate a 30% reduction in the size of the tumor on my spine, considerable improvement to the right lung, no new growth, and two other spots remain stable.  I am not 100% sure how to quantify the considerable improvement to the lung comment, but it sounds good to me.  All my blood came back within  the norms so I received my 5th dose of Pembro on Tuesday.

I wanted to share this as hope for those that can't handle the combo.  I was pretty doom and gloom when they told me I couldn't continue with it.  There is so many success stories with the combo that I thought what is the point of trying Pembro.  Keep fighting even when you feel there is nothing that can help.  I am by no means in the clear, but at least I can enjoy the next three months until my next scan.  I can spend the summer with my wife and kids knowing, at least for now, we are winning the battle.

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J.bun's picture
Replies 1
Last reply 5/20/2017 - 8:31am
Replies by: UBContributor

It has now been 6 months since my advanced melanoma diagnosis, and definitely filled with some sharp rocks - but also a calm(er) current.

After a stint in the hospital where I could barely breathe or walk upon my release in January (allergic reaction to Zelboraf), earlier this month I took a Caribbean vacation with my DH and could keep up with all the activity. (Yes, I was covered in sunscreen, a floppy hat, and UPF clothes ....when I came back, multiple co-workers said in the horror "you don't even have a tan"). 

The last 6 months have been challenging - working through 3 drug combos - but I just had my 3rd scan and am thankful for the results:  my lymph nodes are all clear!  ...Yet, there are two small "areas of activity" on my spleen that have showed up... my doctor is not too concerned about them given what appears to be a complete response, but I cannot let out a total sigh of relief.  And it seems it is not too uncommon for nodules to come up that are indeed, 'nothing.'

Nonetheless, the plan had always been to get the max benefit from BRAF pills and then move to pembro/Ketytruda for maintenance and monitoring.  So, that is where I go next... and hope this activity in the spleen is nothing or that Keytruda will nail it. 

My thoughts and support are here for everyone.

- J.

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pup's picture
Replies 2
Last reply 5/20/2017 - 8:25am

HI all,
After reading many posts everyone here seems to be a closely knit group. I have many questions that I have not been able to answer from diligently surfing the web. Hopefully I can get the answers I’ve been looking for.

First my Info:
I have stage III-B (diagnosed 2012) & have had 3 surgeries so far (since 2013) to remove tumors localized on the inside of my left thigh near my knee. I've also had chemo/interferon (2013)to stimulate my immune system. My surgeon says I've already got the maximum benefit.
Now I'm facing Superficial groin node dissection as there were cancerous nodes removed during my last surgery- Apr-'17. Matter of fact, in all my previous operations a few lymph nodes were removed with very little pain.

After the surgery other treatments coming up include “ILI--Isolated limb infusion” & “BRAF targeted therapy ”. Maybe someone here can share what they know about these procedures.

 

Now for the questions: ???????????

When you have all the nodes of the left groin removed what type of pain & other symptoms will I be facing? Can you get around? Is the drain uncomfortable? How long before I can drive? (I live alone)
I've been told that I must have a vacuum pump to drain fluid. And a nurse will be needed daily for a short time to do something?. Not sure what 'something" is.
And in the long term.. (the biggie)  Without those nodes will my leg/foot be swelling because of their loss?  Is there other side effects long-term.

Thx ahead of time

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CindyCo's picture
Replies 1
Last reply 5/19/2017 - 9:16pm
Replies by: rabbits68

So after 2 cycles of Abraxane (which my mom tolerated pretty well and didn't even go bald), we just found out that my mom progressed again.  She now has four lesions on the liver, and some increased lung nodules.  Dr. Ribas at UCLA recommended that she start clincial trials, but due to her previous toxicities to immunotherapy, the only trial that she qualifies for at UCLA is for RGX-104. 

We then went to Dr. Hamid at the Angeles Clinic and he offered us IMCGP100 (which is offered at UCLA as well, but I think Dr. Ribas is more conservative about what he offers us).  It's currently being amended to allow for mucosal melanoma, but it has had some good initial results for ocular melanoma.  We do have to wait for the trial to be officially amended (does anyone know how to find this out?), which Dr. Hamid hopes will coincide with the washout period for the Abraxane (2 weeks to go).  Dr. Hamid has already cleared my mom's previous toxicities with the medical monitor, and he doesn't think it will be an issue (he was even willing to try another dose of Keytruda).  Dr. Hamid has really been an amazing advocate for my mom and we are so glad we are doing the trial with him.  If anyone is in this trial, I'd love to hear more about their experience. 

Dr. Ribas recommended that we try Sloan Kettering and MD Anderson for other trial options, and we are in the process of looking into those just in case IMCGP100 becomes not an option for us.  Interestingly, he told us not to volunteer too much information about her toxicities when she goes elsewhere. 

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It seems to be typical that melanoma patients get regular PET scans every three months (then decreasing to 6 month intervals). I was just turned down by my insurance company for a scan 4 months after my resection surgery. Is this typical to get declined by insurance for a proactive regular scan?

Can anyone provide insight on how my Oncologist can get the scan approved by insurance?

(my insurance is good, Aetna Signature PPO, and has never turned anything down until now)

Thank you!

Danny

Diagnosed Jan 2017 (unknown primary). Surgery Feb 2017 (Speech impediment resulted from ad-hoc submandibular gland removal during CLND). Ipi started Mar 2017 - ended May 2017 (Hypophysitis)

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