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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keepthefaith11's picture
Replies 5
Last reply 3/6/2016 - 5:33pm

My dad had his second infusion on Wednesday. No issues at all after the first one.

Yesterday morning he woke with a fever of 101.6. No other symptoms at all. It then went up to 103 in the afternoon but was brought down to 100 with Tylenol.

Talked to the doctor and she initially suggested ER to check infection, but when I told her there are no other signs she said we could hold off. She said it is a fairly common side effect of Yervoy.

At 6am it was again 102 but again went down with Tylenol. So hard to know if this is Yervoy related or not. We will go to the cancer clinic tomorrow and get bloodwork done, rather keep him out of the ER though.

Anybody experience this?

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Anonymous's picture
Anonymous
Replies 5
Last reply 3/6/2016 - 8:54pm

This might be a silly question, but wondering for those who were diagnosed stage 3 initially and are now stage 4, how long before you ended up in stage 4? 

Jenn - Stage IIIB  (currently doing Ipi [Yervoy] adjuvant treatment)

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Anonymous's picture
Anonymous
Replies 7
Last reply 3/6/2016 - 10:18pm
Replies by: Gwen in Maine, Anonymous, Polymath, Jubes, jenny22

Hi everyone. I just went from stage 3 to 4....found out yesterday. I have a 10 cm mass  on the head of my pancreas and another 9 cm mass lower down in my abdomen. I was wondering if others have tumors this size or larger. I am dumbfounded by the size.....

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Marie with 4 boys's picture
Replies 3
Last reply 3/6/2016 - 7:41pm

I've seen the surgeon who will do the removal/margins on my in situ, but now I'm told there are no openings for 3 weeks to have this removed, unless I want to go under general anesthesia. I just want this off me since the melanoma extends to the margins of the biopsy. Any thoughts? Is three weeks going to make much difference? I'd prefer not to be put under.

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Anonymous's picture
Replies 2
Last reply 3/5/2016 - 12:49pm
Replies by: jennunicorn

The pathology report reads, "Diagnosis: Melanoma in situ".

Comments: This melanoma in situ is rather narrow and does not involve the margins of this punch specimen. However, appropriate excision is advised.

Gross description: Received is a .6 X .7 cm tan cylindrical skin segment. TS 2 (??)

Microscopic description: This punch specimen shows a narrow but poorly circumscribed confluent proliferation of atypical junctional solitary and nested melanocytes with prominent pagetoid spread above the basal layer and focal adnexal involvement.

 

We are meeting with a local oncologist we were referred to by the diagnosising dermatologist. We also have an appt at the Moffit Cancer Center in Tampa, FL. What are some questions we should ask? What does this report say, exactly? The dermatologist didn't even give the diagnosis, it was the nurse, and she acted like this wasn't a big deal which makes me mad on his behalf because I feel like everyone is sending him the message that it's not ok to be worried or stressed. I wasn't there with him and he was a little in shock.

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SarahW's picture
Replies 2
Last reply 3/8/2016 - 12:00am
Replies by: kylez, DZnDef

I tend to go for long periods without checking in on the MPIP forum, because when my husband is between office visits( every 6 weeks) we like to act as if there is no melanoma. This week we made it through a big hurdle. On Thursday Mac had a craniotomy and removal of scar tissue and residual tumor in the parietal lobe. He underwent laser surgery on the same tumor in September. He was discharged from the hospital Friday. The team at Moffitt was fantastic as has been our experience all along. I think he is at week 93 or 94 since starting treatment for metastatic melanoma, which is amazing and wonderful.Thanks to all of you here for being a resource and support!

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MarkL87's picture
Replies 7
Last reply 3/6/2016 - 12:38pm

Hi - 

My girlfriend had a SLNB (1 node removed) 1.5 weeks ago and received the news today that it tested positive in the pathology.  The Dr was out of the office so we didn't speak to him, but have an appointment Monday morning.  We were able to receive the pathology report and I think we're going to get a second opinion from a different pathologist we trust but wanted to get the forum's thoughts on what it says.  Particuarly, from the sound of the report it seems like it was very "minor" involvement but I'm not really sure....any help would be appreciated. 

 

B. Received fresh, the specimen is labeled "left axillary lymph 
node count 15893, background 901" and consists of a 1.2 x 1.0 x 
0.4 cm pink-tan lymph node with attached fat. On section it is 
unremarkable. The specimen is submitted in its entirety. 

B. Lymph node, left axillary, excision: 
Metastatic melanoma in 1 of 1 lymph node (1/1). 
S100, HMB45 (weak and focal) and Melan A are positive. While some nests are in capsule, in one focus there is definitive nodal involvement. 

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bkm355's picture
Replies 3
Last reply 3/4/2016 - 10:13pm
Replies by: ldub, bkm355, jennunicorn

Quick history....had a primary malignant melanoma in situ, stage 0 on back Sept 2012 removed with a WLE.  I just had a mole removed from a new doctor as I moved states on my thigh.  Anyways, this is what came back from path:

PATH:

evolving melanoma in situ arising in arising with association with lentiginous compound melacyotic nevus with architectural disorder, and moedrate cytologic aytypia approximates the margin.

 

Dermatolgoist said the dermapatholigst couldnt really decide if it is a melanoma in situ or not, but seems to mimic it so they are treating it as a melanoma in situ. 

 

which I am fine with another WLE and error on side of caution given my history....just never heard of an evolving melanoma in situ before...

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Hi all I have a docs appointment on Monday to check out a 10 mm mole that's now growing it looks like nodular melanoma and I'm terrified please help x

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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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