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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meeshka6059's picture
Replies 3
Last reply 4/6/2013 - 9:54am
Replies by: susanr, meeshka6059

Has anyone experienced this?

Dad's 3 doctors, oncologist, neurological radiologist, and internist (who works at their retirement community) HAVE NOT called Mom at all. Not during Dad's time on hospice (when we tried to call we were told they were on vacation... all of them?!) or since Dad's passing on 3-26-13. Mom and I are upset about this. Even the vet contacts you when a pet passes away. Of course we are trying to let it go but.... come on.... a call? a note? something? anything???!!! Or is this standard protocol when someone dies "on your watch"?

Dad's cardiologist sent a beautiful note when she found out.

What gives?

Thanks,

Michelle

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Gene_S's picture
Replies 5
Last reply 4/3/2013 - 6:35pm
Replies by: Theresa123, Anonymous, Beth, Phil S, Linny

Dissatisfaction with the institution’s president Ronald DePinho 
and his top executives—at a time when the administration is pressing 
the faculty to meet aggressive financial targets that critics say are 
unrealistic.

------------------------------------------

Here is a link to where there are problems.

http://www.cancerletter.com/articles/20130118_1

 

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

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Anonymous's picture
Replies 3
Last reply 4/2/2013 - 5:21pm
Replies by: Ranisa, mel123

Hello- I have not been diagnosed with cancer, but I have a lot of moles (nearly 200), and I've had several atypical ones removed, including one that caught me off guard and scared me last week. Many are in places that are hard for me to see, let alone keep track of. I want to keep on top of them, but I have tried photography at home and I am just no good at it. My dermatologist was not able to recommend a professional photographer, either. Can anyone recommend a photographer near Baltimore, Maryland who would be willing and able to do mole mapping / total body photography? I only want the photographs for my own use, so I do not necessarily need them to be highly formal or systematic; in fact, some of the more complicated options I have come across on the web look like they involve software that I won't even be able to run on my Mac. I would be happy with high resolution digital pictures with good lighting and clear focus, which I just can't seem to manage on my own. Thanks for your help!

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Hello-

I have not been diagnosed with cancer, but I have a lot of moles (nearly 200), and I've had several atypical ones removed, including one that caught me off guard and scared me last week. Many are in places that are hard for me to see, let alone keep track of. I want to keep on top of them, but I've tried photography at home and I'm just no good at it. My dermatologist wasn't able to recommend a professional photographer, either. Can anyone recommend a photographer near Baltimore, Maryland who would be willing and able to do mole mapping / total body photography? I only want the photographs for my own use, so I don't necessarily need them to be highly formal or systematic; in fact, some of the more complicated options I have come across on the web look like they involve software that I won't even be able to run on my Mac. I would be happy with high resolution digital pictures with good lighting and clear focus, which I just can't seem to manage on my own.

Thanks for your help!

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Janet Lee's picture
Replies 2
Last reply 4/2/2013 - 7:43pm

I don't recall seeing much posted here about tumors not responding to radiation.

Don had cyberknife on an asymptomatic brain tumor, and a week later it was growing, bleeding, and swelling to the point that he was eventually paralyzed on one side and had speech problems.

Just wondering if anyone else has had this experience.

Also, does this mean the radiation to his pelvic area might have had the same affect (haven't had followup scans yet

Janet

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Gene_S's picture
Replies 27
Last reply 4/6/2013 - 11:28am

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

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eric w's picture
Replies 5
Last reply 4/16/2013 - 1:38pm
Replies by: Anonymous, rjack, eric w, Janner

Hi all,

 

My wife had her first dose of Yervoy last week. She currently has multple subcentimeter mets on her lungs...so her tumor load is currently low....she is BRAF negative...my question is for the people who have responded well to Yervoy are you BRAF negative or postive...just curious if there is any type of relationship there..thanks and Happy Easter everyone....

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Cielo's picture
Replies 11
Last reply 4/3/2013 - 4:13pm
Replies by: Anonymous, benp, Bubbles, POW, Charlie S, Fen

I think it is politically incorrect of you to post this topic here.  You are NED, so please go somewhere else where you can plant your turmeric seed and add some guayabano along with it. 

For those of us whose hanging on to whatever little hope we have left, who are looking for encouragement and not discouragement,  don't need to read into such topic in this forum. 

My husband is currently admitted at MDAnderson.  After going through a ten-day WBR, his brain has swelled up and as the only caregiver, things became worse for me to handle so I got him admitted.  We have been here for a week and hoping to get out this weekend. We never felt threatened in anyway that treatment was lacking thereof, infact, we are treated like royalties.  Our main Onc here came to talk to me for Plans B and C.

Cielo

Believe in the healing power of laughter, love and PRAYER.

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/1/2013 - 9:55pm
Replies by: DonW, Anonymous

I have been praying for an Easter Miiracle for Dian. Years ago, Dian helped me and I will never forget her kindness. She is the most wonderful gal and we need her back on the forum.

I have memory problems now and cannot remember where Cigar Bob post his update news. Can anyone give me that info. 

My thoughts and prayers go out to Dian's family. We love your Dian, please get better fast.

AnnM

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Background: Don was denied coverage for Zelboraf by our BC/BS Federal Employee Insurance Plan on February 11, 2013.

Thrilling news this week is that our appeal to the Office of Personnel Management in Washington DC was APPROVED! This is a little anti-climactic, since Genentech agreed to provide Zelboraf to Don 2 weeks ago. However, it is our sincere hope that this victory will pave the way for other non-V600E BRAF-positive patients.

Don continues to do extremely well at the rehabilitation center. After 3 weeks, his strength and stamina have improved phenomenally. He's been on the Zelboraf for two full weeks. When he started the Z, he was extremely weak and almost completely bedridden, so his oncologist started him on 3 pills every 12 hours. In those two weeks, he has progressed to walking with the assistance of a walker, has been practicing on stairs, and his wit, intelligence, and sense of humor have bounced back 100%.

Looking at these two paragraphs, they seem so "short." But you all know the emotion and stress and huge amount of effort on the part of both patient and caregiver that underlies every single word.

I just realized that I had never updated Don's Treatment profile since I joined this community, so it has now been updated with the events that have happened over the past 2 1/2 months since getting the diagnosis. What a ride it's been...

We return to Dana Farber on Tuesday, April 2. They are not going to believe how well he's doing. I'm wondering if Dr. Ibrahim will increase his Zelboraf dose.

I am hoping to have a conversation with Dr. Ibrahim about Plans B and C... Don did have one infusion of Ipi before all hell broke loose and he became partially paralyzed, had brain sugery, and conquered rehab. Don't know if she will entertain continuing with Ipi while he's on Zelboraf (I believe we might be able to get 3 more doses in within the 16-week window). Is this something we should be asking about?

I have also been in touch with Dr. Keith Flaherty at Mass General who is willing to see Don for another opinion/options. Here's what his nurse conveyed to me just yesterday:

"Dr. Flaherty suggests that your husband can plan to be evaluated here either at the first suggestion of tumor growth on his scans from this point forward or, alternatively, to come to see him while still on therapy and responding.  This allows for a general discussion of options.  The only disadvantage of the earlier visit is that the clinical trials are evolving so rapidly that he theoretically would  go on might be closed when he he would need them but others might be available."

Any reactions to this?

Positive thoughts, enormous thanks, and love to you all.

Janet Lee

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KevinM's picture
Replies 9
Last reply 4/1/2013 - 5:53am

So, I just realized that today is my 7th year anniversary of being NED!! I lurk on this site a bit now....but it was a huge part of helping me through the surgeries and Bio-chemo in the summer of 06. 

I was first diagnosed after finding a lump under my arm. I have an unknown primary. Like most I was pretty scareed when first diagnosed and couldn't think about anything else but melanoma. My youngest son was in high school and oldest a freshman in college. I remember my wife crying one night saying "I only want 5 more years with you". I looked at her and told her to expect to get old with me....she wasn't going to get rid of me that easily!

Since then, I've watched 2 amazing young men grow up, graduate college, get great jobs and find amazing young women. Run 9 marathons, got my motorcycle license and bought the Harley of my dreams. Volunteer with the Melanoma Foundation of New England as often as I can.  Looking forward to celebrating  my 32nd anniversary later this spring! She wanted just 5 more years???? Haha....not gonna get rid of me any time soon!!

To all engaged in the fight right now.......keep fighting and live life to the fullest everyday!!!

Peace and love to you all!!

Kevin

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Has anyone in this trial experienced significant bloodshot eye(s) in this trial? I am in cycle 12 and had an issue last month paused trial meds for 10 days while using a prescribed eye drop. Eye cleared in about 8 days. back on meds for 10 days and bloodshot is back.

I have had amazing results in the trial with very few side effects - minor rash/itching and some wart like growths on my legs (they weren't much to look at anyway).

Wilfred 

If you fight, you may lose, If you don’t fight, you will lose.

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sjl's picture
Replies 17
Last reply 3/12/2017 - 9:11pm

My husband had his third round of yervoy 2 weeks ago.  He's also on pain meds for tumor growth that is causing jaw pain.  Although he's had some fatigue intermittently since starting treatment and during his prior treatment of carbo/taxol, he's had a whole new level of fatigue for the past week or so.  Some days he can't make it to his office job at all and on others he can work only a few hours before he needs to come home.  The fatigue can come on fast.  It's overwhelming.  Bloodwork done yesterday showed everything to be normal, we were told.  They tested his thyroid and adrenals from what I can tell along with the usual RBC, WBC, etc.  Now they want to see him on Tuesday for more bloodwork.  I don't know specifically what they will be checking as my husband took the call and doesn't ask any questions.  Have any of you had this experience of overhwelming fatigue while on yervoy and if so, how did you deal with it? Is this normal???  Are there things I should be asking the doctor on Tuesday?

He's been in so much pain with the tumor growth and the pain meds just aren't helping.  He sleeps sitting up.  The tumors on his neck are now huge and we've been told that we just have to be patient a while longer.  I do understand that yervoy can take time to work.  I just with he would feel better while we wait.  If this fails, it's back to carbo/taxol to try to shrink them again and give yervoy more time to work. 

We've talked to a radiation oncologist who agrees with the melanoma specialist on the course of treatment.  He reccomended that we talk to a radiation oncologist at UPMC Hillman where he goes for treatment. just to see what he says but for now thinks we should stay the course.  Our options seem so limited.

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5374brian's picture
Replies 3
Last reply 5/5/2013 - 11:10pm
Replies by: 5374brian, lrkg1234, cltml

My wife finished her 4 treatment of Ipi on 3/19. A week before her final treatment the tumor on her throat began to bother her. By looking in her throat it looked as the tumor had grown into her throat area causing some obstruction. We called Moffitt and the oncologist said to come on in for it to be checked. They did a scan of her neck. The scan showed that the tumor had not grown any since Jan. 2013. They assured us that she has plenty of room for drinking and eating but due to it being a high traffic area it must feel strange. The reason given for the feeling of the size change was the tissue and lymph nodes are swollen in that area. We are scheduled April 4th to see a throat specialist at Moffit to see if he has an opinion. The next thing that has started happening now is the lesion in the throat seems to be building up mucus and causes her to gag and spit on a regular basis. Whatever the stuff is coming from the lesion in the throat in the mornings it causes her to have a sour stomach. She said it is the worst tasting stuff she can imagine. Is all of this the treatment attacking the tumor? What is the stuff dripping from the tumor? Thanks for your opinions and help. 

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