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 4
Last reply 4/27/2017 - 5:53pm
Replies by: debwray, Bethharte, BillMFl, Anonymous

Maybe a silly question. I have my 6 month visit after Melanoma in situ on my chest tomorrow. And I have fake nails and painted toes. Do I have to remove my fake nails and nail polish for my melanoma doc to check them? How common is Melanoma of nails? Thanks

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Christine.P's picture
Replies 7
Last reply 4/27/2017 - 1:56pm

Greetings fellow warriors - I recently found out that I have new tumors in my leg, hip, and back (primary tumor was in calf 2015) which means that ipi/nivo and long term nivo did not work for me. I am currently waiting for molecular testing results to find out the make-up of the tumor to determine the next step.

One of the options my oncologist told me about is a herpes vaccine that is injected directly into a tumor. I was wondering if anyone else has used this treatment and what their experiences have been.

Thank you.

Christine P. 

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matthew111's picture
Replies 4
Last reply 4/27/2017 - 12:57pm
Replies by: jennunicorn, matthew111, Anonymous

I am 26 and had a mole check about  in june 2015 and the derm looked at the moles with a dermatoscope and said they were all fine, since then they have not grown larger, but I recently had a appt with a new derm to look at a mole on my arm that was hurting when I went out in the sun and who who did a mole check and and wanted to remove 2 different small, flat moles, but wanted me to come back and do it at another appt. and didn't want to remove the one on my arm that was bothering me. He also only looked at them with a magnifiying glass and not a dermatoscope. I am wondering if he just wants to remove them to make money. They also asked me if I had a family history of melanoma and I said I thought my dad had it, but it turns out he didn't. Part of the problem is one of the moles they want to remove is on my ankle, above the sural nerve which is just half a millimeter below the skin. I know this because I had orthopedic ankle surgery before. They also told me a nurse would give the numbing shot not the doctor, I am very nervous that the needle will hit the nerve and give me nerve damage.

The moles they want to remove dont even look suspicious apart from being dark, one on ankle is 2mm tall 2.5mm wide, one one back is  5mm tall by 4mm wide and the one on my arm that actually bothers me is 8mm in all directions. They are all mostly flat. I get alot of anxiety from going to the doctor becasue I was harmed by a negligent doctor before  and will be sick with worry and insomnia at the thought of getting them removed especially the one on my ankle and the though of nerve damage, espically because I already have pain walking due to joint problems.

I will upload pics of moles

ankle http://imgur.com/ajgO3oV

back http://imgur.com/z8t2bXF

arm http://imgur.com/TxJhJu0

I have a couple questions

1. I know melanoma can affect people of any age, but dosen't it affect mostly older people?

2. Does nodular melanoma mean the mole is raised?

3. If a mole is near a nerve should I go to a derm or plastic surgeon to have it removed?

4. Do you think my moles (especially ankle) are suspicious?

5. Do you think the new derm wants to remove the for money only?

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Anonymous's picture
Anonymous
Replies 8
Last reply 4/27/2017 - 12:25pm

I had a WLE in upper mid back last week.  7 disolving internal stitches and 9 on the surface.  The 9 stitches will be cut out in 4 weeks time.

I have been on a weight loss program for the last few months, through a mixture of cardio and clean eating.   It's been pretty successful, helped my self esteem, and I am keen to keep up the momentum.  I have already entered and paid for a cycling event in Italy in 50 days time.  So being sedentry is driving me crazy!

I went for a 3 mile walk this AM (day 4), and felt OK.  The stitches do feel tight, but not too painful.  But I am unsure how much to push it.  I realise that bike rides would be the last thing I should be doing, as reaching forward would be foolish - but think I would be OK doing increasing amount cardio that isolate my lower body (e.g. step machine, upright stationary bike and maybe gentle jogging in a week or two etc).

I guess I am more wary of when the stitches are taken out in 4 weeks.  Would butterfly stitches help to lessen chances of scar splitting open as I increase activity.  Could I ride a bike in 4 weeks time?

Is it just a case of increasing a little day by day and seeing what works and what doesn't?

Does anyone have any tips for increasing the rate of healing WLE?  Supplements?  Diets?            

 

 

 

Rags

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Joycem's picture
Replies 8
Last reply 4/27/2017 - 12:16pm
Replies by: KatieB, coltbnme, Joycem, Anonymous

At my skin check today (9 month follow up to removal of deep nodular amelanotic lesion) my derm recommended the Castle Decision Dx test be done on my biopsy specimen in storage.  I agreed since she said it was no cost to me but forgot to ask when to expect to hear results. 

Just wondering what prompted them to start recommending now. Guess I should have asked that too. I saw some older posts here that sounded skeptical and link to Celeste's blog post. Kind of feels uncomfortable to be thinking about percentages and likelihoods of recurrence or spreading as at this point as I had those thoughts tucked away for now.

Possibly just the results of marketing millions being spent?

https://melanomanewstoday.com/2015/07/31/castle-biosciences-receives-funding-decisiondx-melanoma-test/

 

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MaPerny's picture
Replies 16
Last reply 4/27/2017 - 9:54am

Yesterday, I lost my soulmate, Juan, and my son lost his Papa.  After 4 years fighting this awful disease, he reached the end of the line.

The pain is raw and recovering from both losing him after 30 years of marriage and the toll of being a caregiver for such a long period will not be easy. But it was my pleasure to care for him over these years through multiple surgeries, radiation, chemotherapy, immunotherapy and TIL.   If I made it a little less painful and easier for him to cope with in any small way then my job was done.

I would like to thank everyone for the advice and encouragement.  I see so much hope for the future with new treatments and progress every day, just too late for us.

good luck and god bless

Maria

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marta010's picture
Replies 9
Last reply 4/27/2017 - 5:06am

After 5 tremondously difficult years, my husband FINALLY is responding to treatment!  His latest PET/CT scan showed a significant reduction in the tumor activity in his cervical lymph nodes and minor reduction in his periportal and portacaval nodes.  Better yet is that his brain MRI showed stability with no new tumors.  His last Keytruda infusion was in July 2017 - had to take a break due to a sudden brain edema event that required a craniotomy and Gamma Knife.  Currently, he's continues to take Dabranib - we hope to discontinue that after his next scans in 3 months if the response continues.  His quality of life still is hampered by joint pain in the hips and knees which limits his mobility.  Would love to know what others are taking to mitigate this side effect.  Thanks.

Ann

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wilj264's picture
Replies 5
Last reply 4/27/2017 - 2:25am

Hello.  I am a 36 year old white female who recently developed a dark spot under the toenail of my right big toe.  I don't recall injuring it and it doesn't hurt.  After furiously Googling what this could be, I have made an appointment with my dermatologist but it's not until next Wednesday and I may drive myself crazy worrying before then.  I'm attaching a picture - does this looks more like a hematoma than a melanoma?  It's not a continuous vertical band of pigment, but I'm not sure if it's coming from the nail matrix or not because of its location on the side of my toenail.  Any thoughts anyone may have would be very much appreciated.  Thanks in advance for your help!

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sgreenberg's picture
Replies 6
Last reply 4/27/2017 - 1:37am
Replies by: sgreenberg, marta010, Bubbles, Anonymous

Hi,

After 6+ months of progression-free treatment with Tafinlar/Mekinist, my wife's melanoma brain mets started multiplying and her onco moved her to Keytruda. 

However, the onco also left her on Tafinlar/Mekinist concurrent with the Keytruda - since we had leftover stock of the drugs (our insurer won't cover both).

Now, we're almost out of Tafinlar/Mekinist, and the Keytruda seems to be working.

I'm debating whether to seek out another source of Tafinalr/Mekinist (perhaps go to war with the insurer), or just take her off it altogether. I've found very little info online about the benefits of this combo.

Does anyone have experience with using Tafinalr/Mekinist + Keytruda concurrently, or encountered research supporting it?

Many thanks,

Steven

 

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Sfern5's picture
Replies 11
Last reply 4/26/2017 - 10:31pm
Replies by: AB, cheris, Sfern5, pookerpb, Bubbles, Anonymous

 Does anybody have any information about difficulty with a cough/coughing up blood And  endless " bronchitis" while on Keytruda?

 They postponed a couple of my treatments to put me through pulmonary exams and cardio exams and came to the conclusion I have bronchitis not pneumonitis which would be a side effect of the immunotherapy.    But it won't go away. It's been about 2 1/2 months of and was coughing and pain in my lungs. My tumors are gone but I'm exhausted. We've tried all kinds of  decongestants, steroids and whatnot. Nothing's working. Any insight would be appreciated. Thanks.

Cancer, Schmancer.

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snow white's picture
Replies 8
Last reply 4/26/2017 - 6:44pm

Hi All,

Well the IPI sent Dads liver into a tantrum.  His numbers just kept climbing.  He went to his Doc. appt on Monday and she said "we are admitting you", what?  He had driven himself there. We got the call, Mom packed up and we headed out.  We had to go through the Emergency to get him admitted, 7 hours later he had his room.  They were giving him steroid and Celcept to get the numbers down, unfortunatley the Celcept backfired and made it worse.  So they pulled the Celcept, gave more steroid and another drug (can't rememebr the name) and guess what?  His number are coming down!!  They also did a biopsy on the liver, wont get results until Monday.

But the best news is that he had a CT scan and it was CLEAR!!!!!!  No Cancer!  Our doc called me and is thrilled and shocked.  He will get an MRI next month to check the brain, but for now we are thrilled.  He comes home tomorrow!!

Just wanted to share some good news.

xo Jen

Jennifer-- Dad has stage IV Mel. No primary. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. Receiving treatment @The Angeles Clinic

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zfishberg's picture
Replies 3
Last reply 4/26/2017 - 2:08pm

Hello!

I read several posts on this forum regarding pseudo progression of Keytruda when treating the brain mets.

In case of my husband - we had 3 infusions since middle of February . MRI has been performed in March and another one yesterday. Both of them showed decease progression with multiple new lesions and size increase of some existing lesions

i have read that Keytruda effect can sometimes be delayed and enlargement of existing lesions due to swelling is also common.

But what about new lesions? Is it the decease progression and we just have to be patient and continue with Keytruda?

Or it's better to stop and switch to ipi/novo?

I know that it's case by case basis, but wanted to hear from other members of this forum.

 

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Dear MPIP Community:

This week we were contacted by Schlesinger Associates (www.schlesingerassociates.com), a market research company, that has a research opportunity available for patients in the Phoenix, AZ area. 

They are interested in interviewing melanoma patients diagnosed with Stage III or Stage IV. The interview would be in-person in their Phoenix office and will last 1 hour. Participants will be compensated $150.

If you are interested in this study, or know someone who is, please email Alia.Khan@schlesingerassociates.com by Friday May, 11th  to see if you qualify.

Thank you, as always, for your valuable input. 

Best,

Shelby - MRF

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Anonymous's picture
Replies 1
Last reply 4/26/2017 - 1:15pm
Replies by: Anonymous
Anonymous's picture
Anonymous
Replies 1
Last reply 4/26/2017 - 12:29pm
Replies by: Bubbles

  Hello--I am new here.  First of all, thanks for all the topics and posts-really helps to know we are not alone!

 My husband was diagnosed with stage 4 melanoma and is now on the Opdivo/Yervoy regimen.  He had his second infusion yesterday  (25th).  His main complaint is extreme tiredness and "cotton mouth".  His glucose level was 222.  He was told to fast the next time he has labs (three weeks away) and see if it comes down.

 Could this be a side effect--or should we be concerned with diabetes and this is something that should be checked now and not wait three weeks? I keep thinking that if it was a big enough concern the doctor would have suggested it be tested sooner.

 Anyone have any thoughts about this?  Thank you!

A Concerned Wife

 

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