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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Maria C's picture
Replies 7
Last reply 3/9/2016 - 11:54pm
Replies by: Maria C, pookerpb, Polymath

Hi all - 

I'm wondering if anyone else on this board has dealt with pneumonitis as a side effect from the ipi/nivo combo, and if so, how long did it last and what did your treatment look like?

I'm 6 weeks in with this side effect after my 4th and final dose of the ipi/nivo. At first I had a CT scan of the lungs, and there was a little activity but nothing too alarming. With the hope of not going on steroids that would prolong the first maintenance (nivo) infusion, I was given antibiotics at first to see if that cleared things up, then when it didn't I was given a short burst (1 week) of steroids which helped. A week after I got off them and was scheduled for the infusion, I had shortness of breath again followed by a wait & see period of 2-3 weeks. Still not clear so I got another CT scan earlier this week which showed lots of activity, and on Monday I will have to go for a bronchoscopy to identify whether it's inflammation or infection (possibly PCP).

Has anyone else had a similar experience? I was told by the pulmonary doctor today that treatment for this can last up to 6 months, which would delay my maintenance regiment significantly ... a troubling thought ...

Thanks for any insight others can offer.

 

 

Maria - Stage IV, MM, brain mets, responder to ipi/nivo combo

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Gene_S's picture
Replies 17
Last reply 3/7/2016 - 5:48am

5 years ago my husband who had just became Stage IV started the Clinical Trial of (IPI) Yervoy 10mg/kg and GM-CSF.  We had the 5 year appointment yesterday with the oncologist and he has been NED for almost 3 1/2 years.

There were 12 or 13 people in this Trial at University Hospital in Cleveland, OH and 4 of them are doing good still.

If you would like to read about his journey with melanoma and the trial you can check out his profile.

Judy loving wife of Gene Stage IV and now NED

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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DZnDef's picture
Replies 9
Last reply 3/5/2016 - 7:52pm

Hi all,

It looks like my brother will be starting Nivo (Opdivo) next week.  I have read in the past some really good advice here on MPIP on how to prepare for the infusion (drink lots of water?) but I am having trouble finding that advice using the search tool.

Does anyone here have advice on how best to prepare for a first-time Nivo infusion?  Or, could you point me to the thread(s) that already discussed this?

My brother is in good spirits but is very weak (anemia, he requires blood transfusions) and has lost lots of weight.  He has mets everywhere.  We are happy they will be treating the cancer soon (he had 10 asymptomatic brain mets zapped last week - 4 found via regular MRI and an additional 6 found with the Hi-Res MRI).  Only blood transfusions this week and then Nivo will start next week.

Any and all advice/suggestions appreciated!

Cheers,

Maggie

Maggie - Stage IV (lung mets unknown primary) since July 2012

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sweetaugust's picture
Replies 16
Last reply 3/8/2016 - 12:21am

Hi all!  Just giving an update that scans are all still perfect....3.5 years on Keytruda.  I feel great and healthy.  I'm not on any prescription meds (other than the Keytruda of course) and I don't take any Advil or Alleve or aspirin either.  I do have joint pains from time to time over the winter months, and some dry skin patches, but other than that, no complaints.

All my best to you, Laurie

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Anonymous's picture
Anonymous
Replies 2
Last reply 3/4/2016 - 9:58am
Replies by: Gene_S, MoiraM

Just finished Yervoy treatment. I have major side effects  such as colitis and hand pain. I am curious if anyone has good results with Yervoy

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Erinmay22's picture
Replies 18
Last reply 3/5/2016 - 12:47pm

Hi Folks -

I know I've been MIA lately!  Some folks that have been around here awhile may remember me! (I keep a blog: www.melanomaandthecity.blogspot.com).  I just thought as we go thru navigating this awful disease, a little good news never hurts, right?  March 1, 2011 I had a VAT's procedure done at Sloan Kettering to see if Melanoma had spread to my lungs.  That biopsy would confirm I was now stage 4.  As we know (Thanks Dr Google), statistics for stage 4 would give me about a 10% chance of still being here today.  I would have the lung mets go away on their own, only to have another tumor come back in my small intestine (May 2012).

Since then, I did Zelboraf, 4 doses of Ipi, and 2.5 years (41 doses) of Merck's Anti-PD1 Keytruda as part of a Phase 1 Clinical Trial.  I stopped that trial last May.  I continue to have stable scans (nothing new or growing).  They won't claim NED since I have swollen lymph nodes in my abdomen.  Those aren't easy to biopsy but they are pretty sure are dead disease.

Anyway, just wanted to share some good news.  Slowly trying to catch up a little on these forums!  (now that I don't travel full time for work).

Thanks,
Erin

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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Anonymous's picture
Replies 2
Last reply 3/3/2016 - 12:28pm
Replies by: Anonymous, jenny22

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
Anonymous
Replies 5
Last reply 3/3/2016 - 12:15am
Replies by: Anonymous, Janner

Hi, I'm new here, but not new to Melanoma, I was diagnosed with Malignant Melanoma 17 years ago, I have also had Basal Cell Carcinoma, both surgically removed. So here's my thing. I recently had an MRI due to headaches, tingling, numbness and pain in my finger tips and toes, loss of balance, trouble swallowing, slurred speech and phantom smells, I was then refered to a neurologist who sent me for another MRI, to see a speech pathologist and to have my eyes checked by an opthalmologist (I have Adies Tonic Pupil, in other words my pupils don't work). Anyway I have to wait another month to go back for a follow up appointment with the neurologist, so I figured I would ask a few questions here. 

 

I had melanoma on my stomach, I now see a new mole just above my scar and have noticed a feeling of fullness around the area and into my groin, my glands in my groin feel swollen too, Can anyone tell me if melanoma hurts, if you can feel it in the skin, as in do you feel anything with melanoma other than in the advanced stages? I don't feel any lumps in my skin, I just feel a bit of pulling and fullness, does that make sense?

 

I appreciate any feedback on this whatsoever, especially from people who were diagnosed many years ago and then it has returned later. 

 

Wishing you all a wonderful day!

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Marie with 4 boys's picture
Replies 1
Last reply 3/2/2016 - 9:02am
Replies by: Janner

I am recently diagnosed with melanoma in situ, and go to see the surgeon tomorrow to discuss treatment. I'm wondering if anyone has experience with having surgery, and then finding that they didn't take enough after the pathology report comes back. I think I'm more scared of this than anything else (other than wanting this cancer off my skin before it spreads). My biopsy reported that it extended to the margins of the shave, and it is in the middle of a large (8 in by 5 in) congenital nevus/freckle area. Since it's not like a "normal" nevus of small size, I'm a bit worried about this. I'd appreciate any thoughts on the matter of determining margins.

Thanks.

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kc24's picture
Replies 3
Last reply 3/2/2016 - 2:29am
Replies by: jennunicorn, kc24

Hi this is my first post. I went in last week, February 23, for a suspicious (to me) mole to be biopsied that has continued to grow, raise, and become itchy throughout the last 2 months. This mole on my scalp has always been rather large but it is now 15mm. It also has a cousin mole on the exact opposite side of my head but much smaller at 7mm and less disfugured (One above each ear). I also had a grandma die of Melanoma at 40 and my other grandma had stage 1 Melanoma as well as one of my aunts. 

A little back story... My primary thought it might be a seborrehic keratoses and said she would remove it if a dermatologist thought the same. She told me if I got a call from derm then they think it's something else and would call me in a week. They called me an hour later telling me I needed to make an appt w/ derm. So I did. The morning of the 23rd I got a call saying the derm was out sick and I could reschedule w/ him for March 7th (heck no) or I could see someone that day but a different person. I went in, I was a little disappointed it was a PA and not an MD. She said my mole looked perfectly fine (then why am I in here if you've already seen the pictures??) she told me she would biopsy it if it made me feel better so I said, take that sucker to the lab. She did a shave biopsy, I didn't find out till later that this is a little controversial for possible melanomas,   and she didn't even tell me what it was  until I had to ask when she was about to shave a small part of it off. It has now been a week, how long she said it would take, and I can not get a hold of her or my primary! I am so frustrated. This is my life they are messing with. 

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Anonymous's picture
Replies 3
Last reply 3/6/2016 - 8:52pm
Replies by: Mom2Addy, Bubbles, Anonymous

My husband barely gets out of bed. The joint pain is very bad even though he's on half doses. I was hoping the pain would go away but it's haunted him for weeks.

Does anyone know WHY this happens? We like to understand what's going on.

Does anyone know how to make it better? Marijuana used to help but there is a lump in his lungs the doctors are worried about so they asked him to stop smoking everything because it causes inflammation.

I'm sad seeing him so unhappy.

Rebekah

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wasserd's picture
Replies 5
Last reply 3/2/2016 - 11:16am

I've been searching the forum and unable to find any posts here about the apparently less common ocular side effects to tafinlar/mekinist.

I began tafinlar (solo) in mid-April 2015 as a result of multiple brain mets. The tumors responded well and I remained on tafinlar only, had gamma knife which was also successful. Then over the summer of 2015 the side effects began to accumulate - primarily thickening of my foot soles (making walking painful) and then in late August, a very painful uveitis in one eye.

At this point I learned that the ocular side effects are so rare, my oncologist had only had one other patient experience them, and in their case it presented totally differently, and in both eyes simultaneously. My ophthalmologist, of course, had never had a patient experiencing uveitis secondary to cancer treatment.

I got the uveitis under control, and started mekinist, which I think has mitigated the skin side effects, and even though I had two more cases of uveitis, they were not as severe.

Now, after months of treatment with Prednisone eye drops (and now, beta blockers to bring down the pressure in my eyes, which was elevated by the Prednisone), I am about to stop using the Prednisone drops (at my own insistence - my ophthalmologist is understandably wpried about my stopping).

My vision has returned to 20/20. The pressure is still elevated (in fact, it has increased), but I'm hoping that the combo of tafinlar and mekinist will keep me from experiencing another painful bout of uveitis.

I have access to medical literature, so periodically I look for new papers on the subject, but I just wanted to check in here to see whether there might be any others like me, and what your course of treatment has been.

Thanks,
Deborah

My melanoma/life blog: ill-live.com

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Over 2000 participants from everywhere!  Gather a team or just come.  http://melanomainternational.org/

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Hignite's picture
Replies 4
Last reply 3/1/2016 - 6:00pm
Replies by: Hignite, Janner, Anonymous

I'm the aunt of a 26 year old female who was preliminary diagnosed two days by her dermatologist with Stage  1A  melanoma , superficial spreading type.  Breslow thickness 0.35 mm, Clarks level 111.  Maximum tumor thickness 0.35 mm.  mitotic rate, None identified.  Tumor-infiltrating lymphocytes: Present, not brisk. Primary tumor.pT1a-melanoma 1 mm or less in thickness,no ulceration, less than 1 mitosis/mm.  The incision was in the middle of her back.

she is returning to her dermatologist tomorrow.  We are assuming to review her results and perhaps take more skin tissue.  She will be armed with questions.  I am a cancer survivor and believe in being as aggressive as possible in learning about diagnosis and treatment.  She is my only niece!

Because of the Clarks level 111, is a sentinel lymph biopsy recommend?    Would anyone recommend consulting an oncologist vs. wait and see?  Are there any other tests recommended, MRI, brain scan??  

Any insight would be greatly appreciated.

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Bigdaddy5's picture
Replies 4
Last reply 3/1/2016 - 11:04pm

Sorry. I really don't wish to be here reading all your posts. But I am. I'm really pissed  I appreciate your info - and I figured I should introduce myself and perhaps be able to find the good in all of this.

Me: I'm a Caucasian male 46 years of age.  About 74 inches and 225 pounds.  Father of 5 with my oldest at 21 and youngest at 12 (three in college this September).  I own a small business with 10 employees.  Been very active past 2 years and got into shape and began using "Loseit" app to record every crumb of food I ate since 5/2014 through today.  I lost forty pounds at my peak weight of 215 last September.  My running progressed in that last year I ran two marathons (very slowly) but I managed to beat Oprah's time on my first try!

I was diagnosed stage 2a on 2/16 based on t3a biopsy returned from a mole scraped off right front torso.  Had wide excision surgery with sentinel lymph node biopsy on 2/25 where two lymph nodes were removed from right armpit area.  I sit here in my bed reading all your stuff trying to see what path lay ahead for me and my squad.  Not clear at all.  Being treated at Inova Melanoma Center in Fairfax, VA.

Thanks for letting me introduce myself!

Neil D

 

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