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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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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Christine.P's picture
Replies 6
Last reply 4/27/2017 - 2:18am

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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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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KatieB's picture
Replies 10
Last reply 4/26/2017 - 10:05pm

Hi all,

I am newly diagnosed 1A.  I have kids and want to do everything possible to stay on the good side of the statistics.  I have been told to wear protective clothing at all times during daylight hours but that seems really difficult.

I run marathons and I can run a lot of my miles on a treadmill but when I'm doing a hot long run in the summer, I can't imagine wearing long sleeves and tights...

And it feels sad to me not to wear shorts all summer.  Though I can get over the sadness - I would rather be alive with pants on if it's important.

So, I guess, I wonder what you think about sunscreen vs. protective clothing when you are outside?  Is sunscreen ever enough if you're outside for a couple of hours? Or is protective clothing really the right answer.

Also, I have a number of moles on my back and stomach but don't have any on my arms and legs.   So, are my back and stomach the most important areas to cover or does it not matter?

As I said, I have kids and more than anything I want to be there for them as they grow up.  I'm wondering how you all handle the need to avoid the sun with living your life.

Thank you for any thoughts,

Katie

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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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debwray's picture
Replies 20
Last reply 4/26/2017 - 6:39pm

Hi, 

Liver numbers elevated dose 2 of combo. Rechallenged for dose 3 , 23/ Jan resulted in more elevated AST and ALT.

Scans show diseae in Liver , Spine , Pelvis , lung Sacrum and breastbone, Had two shots at radiation which helped but was supporting myself with two hands on washbasisn last weekend heard a crack and fell to the floor.Couldnt get up again andbruising is extensive tho told no fracture.

Have been passed to palliative teams and feel so low as every grab rail, or profiling bed offer tells me things are going to get worse...

I'm 55 and have so much I want to fight for but prior pd1 seems to exclude for so many things.Am being treated in Manchester ...at a specialist centre.Am loving stories of successs with Ipi Nivo, could just do with some for me too.

Anyone know if it is worth trying pembro after nivo ? given different routes....

BTW have..2-3 groin lymph nodes accessible for biopsy easily. Am currently on 4 tabs of dex to help  but could taper if appropriate.. Help please as I don't want this to be the end of the road....

Deb

 

 

 

 

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Willowcaregiver's picture
Replies 6
Last reply 4/26/2017 - 2:41pm

My husband has had 10 lesions in his brain the first 5 were treated sucessfully with SRS Radiation, as were the 2 in the second set. Recently (March 29, 2017) 3 more lesions were found in his brain 4 days later he began loosing balance and motor skills. Upon addmission to hospital on April 3 out was discovered line of the mets was bleeding. He had surgery and 5 days of physical rehab and came home 13 days after being admitted. 36 hours after returning home he had a horrible seizure and was taken back to hospital where out was discovered there was an additional met that had been bleeding in a different address of brain. He underwent a second surgery and in now home doing well. He also has a met to a lung node and a tumor in the tail of the pancreas. Has anyone had 2 bleeds on the brain? Does anyone know what they about the tumor on his pancreads??

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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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Has anyone have mohs surgery after excision did not get it all?  3rd primary in a year.  The first 2 required a surgeon due to thickness.

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matthew111's picture
Replies 3
Last reply 4/26/2017 - 1:50pm
Replies by: matthew111, jennunicorn, 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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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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