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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Linda J's picture
Replies 1
Last reply 1/3/2011 - 7:32pm
Replies by: Anonymous

I am considering doing the braf/mek combo phase I trial at PMH in Toronto. Are people seeing good results with these drugs?

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Wendi Lynn's picture
Replies 9
Last reply 1/3/2011 - 2:48pm

So, I know there were quite a few folks that started the one month HD Interferon around the same time as me.  Yesterday was my last HD and I'm SO GLAD it's over.  Lots of side effects, more sleep than I've had in months but I'm done!  I'm hoping that everyone else came through ok!  I also wanted to say thanks for all the advice and nice words.  Every little bit helps!

On to the next challenge!!!

Wendi

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Springbok's picture
Replies 15
Last reply 1/2/2011 - 9:55pm

I have been coming down from a month long high after the results of my SNB were NED. I had lost 10lbs just from the stress of waiting for results. The pathologist didn't seem to be in any hurry. And I was also not very hopeful. The primary tumour was ugly - Breslow 2.6mm, Clarke's level iv, ulcerated with Mitosis of 6/mm2.

Now in the cold light of dawn, I am thinking things over and would ask for some advice. Firstly, I read that the SNB is only 90 to95% accurate. What about the missing 10%?  Did they get the wrong node? Should one do the SNB again? Or does the cancer spread directly into the blood, and if so , can blood tests detect it?

The cancer surgeon sent me away, and told me to come back in 6 months for a check-up. Seems pretty casual to me, considering the speed with which this disease works. Also,  here in Calgary, with a public health system, they will not authorize any scanning unless there is good cause, and apparently there is not at the moment.

My buddies are urging me to go down to one of the good cancer hospitals in the US. But what more can they do for me?  All this would be on my own nickle, and I understand that PET scanning is very expensive. Still, if it furthers the cause, I will byte the bullet and pay for it.

Any suggestions on the next step?

Springbok

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nicoli's picture
Replies 2
Last reply 1/2/2011 - 10:01am
Replies by: Rocklove, JuleFL

Dear Melanoma (NOT!),

Well, 2010 has come and gone and only partially because of you, mel, it was without a doubt the worst year of my life. We had quite a fight. You did your best, even returning after I thought I had kicked your a**.  

But.....I'M STILL HERE!  And I expect to be here this same time next year, thanks to my God, my good doctors, and my treatment plan.

But will you still be here next year, mel?  Maybe not, maybe they will find a cure in 2011. Maybe 2011 is your final year, mel. Maybe. You BETTER be scared, mel, cuz nobody likes you mel, nobody is praying for you, nobody is working and fighting to find a way to keep YOU alive.

Maybe you better run home crying to your mama, mel, maybe you better go home and get your affairs in order, mel !

So here we go again, just you and me, mel. Ready?  CUZ I AM. Round One of 2011: Biochemo starts next Thursday. Let's see how you like it, mel.  I know I'm gonna LOVE it. Can't wait! Let's go.

Most sincerely,

Nicki, stage 3b

 

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

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Seems to have a lot of good stuff in it.

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Not all SPF 50 sunscreens are equal.

Do the best you can.

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Kim K's picture
Replies 10
Last reply 1/1/2011 - 3:23pm

Hi all,

As seems to be a problem in the field of oncology, what do do with your patient after they are no longer receiving treatment.  It has been 5 months since my last scans showed I am NED (hooray!) yet my oncology team still hadn't come up with any kind of follow up schedule for me.  Only after I flew to Honolulu for some face time (my primary onc. had a sudden emergency so I saw his associate) did I get any feedback.  My oncs. almost want to have my primary doc who knows nothing of melanoma to follow me, since I am no longer in active treatment and NED.  I told them NO because my follow up should include PET.  Queen's Hospital in Honolulu has the only PET/CT machine in the entire state.  Why would I want anyone here in Hilo to follow me when they don't have the equipment (or expertise) to do so?

Question - for those of you NED and not in a clinical trial, what are your follow-up scans and when.

I know there is no consensus on the issue, but for me, I do not buy into lets wait until you have symptoms.  By then you tend to be toast.  I have creepy crawly smoldering disease that showed up in only 2 spots after 7 years at stage IIA.  IL-2 cleared my final lesion this summer.  I DID get the associate (who saw me while in the ICU for IL-2) to agree that there needed to be some sort of scanning follow-up since I have no symptoms or abnormalities that can be detected with blood work or on a physical.

The doctor ordered a chest CT and brain MRI with a PET.  My concern with that plan was detecting any abdominal disease seeing as mel also likes the liver and small intestine.  He said he didn't think it was necessary since my mel came back to my lung and chest wall.  I disagree and want to make sure it doesn't pop back up elsewhere and we miss it.  I am sure the PET will catch it but there are also false negatives with PET that CT can detect.  Still no word as to a routine scanning schedule, let alone the kind of scans and locations to be scanned.

My gut tells me to do scans every 6 months for 2 years, and then if nothing, annually.  They should include brain MRI, PET / CT & chest / abdomen / pelvis CT.  I know if mel is planning on returning it will most likely do so within the next 2 years.  That being said, since I seem to have the slow moving mellower form of mel, I think it is OK to do scans every 6-12 months unless symptoms arise.  I just can't get anyone to commit to a game plan and I am the one pushing everything.

My goal is to catch any recurrence early so I can buy as much time for treatment or a trial when it may still actually make a difference.  I don't want to wait until my tumor burden makes itself painfully clear.  In the meantime, I deeply feel I will be one of the few that will never hear from mel again.  I hope I am right on that.  If not, I want to be as proactive as possible yet avoid necessary and costly scans.

Thoughts anyone?

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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Leigh's picture
Replies 8
Last reply 1/1/2011 - 11:20am

Hi there,

I have never posted on a board before, mostly look at others and try to learn from them.  I hope you dont mind me asking for some direction.  I have been so very lucky to recently have a negative sentinel node biopsy after being diagnosed with a melanoma recently.  The nodes were enlarged (but had been painful so thought to be related to a small infection I had) I dont know what type of follow-up I will be having (I believe 3 monthly skin checks) and have had no other tests done (eg CXR etc) although I know that current thinking is that further investigations are not indicated. 

My main concern is making sure I stay well and I am so so sorry when I read others stories.  I have two young children, my youngest is now 12 weeks old and I am still exclusively breastfeeding after expressing through the time I was in hospital with surgery/radioactive tracing etc.  Does anybody know if breastfeeding has any impact on women with a diagnosis of melanoma.  I know that there is some indication women avoid HRT due to a possible hormonal link, previous thoughts that pregnancy impacts melanoma, although this doesn't seem current thinking opinions change.  I want to try and find some conclusive information about this and wondered if anybody could point me in the right direction.

I have been reading frightening stories of people having WLE/sentinel node biopsies and getting the all clear, only to find out years later that they have recurrence and I need to do everything I can for my childrens sake to make sure that doesn't happen.  I'm sorry to write this when so many of you have got unbearably difficult situations and this must seem very minor in comparison. 

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KellieSue's picture
Replies 4
Last reply 1/1/2011 - 7:48am

Brain Mri: Clear, thank goodness.

Ct Scan: definite shrinkage in neck and also stable disease. Lungs: about 4 nodules in each lung after 8 weeks of ALT. Darn!!!!!

So ALT worked on the neck and theres nothing else in the body or brain, just the lungs now. So 8 more weeks of ALT at a higher dose, Dr. Mo believes the trial people will okay it. I was the 1st person to do a 2nd 8 week treatment and I have shown progress in the past. I know this treatment and think I can handle it again.

Or high dose IL-2. He said we try it for a week, if I don't want to die then we do one more week. If I can't  handle it or it doesn't do any good it won't exclude me from doing ALT. Or we look at B-raf? Trial should be opening up in the next few weeks here he said.

 Really wasn't expecting these pesky lung nodules to be there. I was just hoping for stable disease. darn, darn, darn!!!!!!

Kellie, Stage IV since June 2008.

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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EricNJill's picture
Replies 5
Last reply 12/30/2010 - 8:57pm
Replies by: JakeinNY, bcl, Joan C, KellieSue

http://well.blogs.nytimes.com/2010/12/28/the-tans-that-bond/

Warning: This article is truly disturbing!

227 female students surveyed, almost 40 percent had gone to tan for the first time with their mothers.  Are you kidding me?

Obviously, we need more information out there in the media about the dangers of tanning.  If they could see what a person with Stage 4 Melanoma goes through, maybe they would think twice.  Is it really worth it?  You may have a "glowing" tan but that tan could turn to tumors and death later...

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I have a friend who is stage 4....been complaining about pain in her gut since spring and her onc and pcp always caulked it up to something else other than melanoma...well now her scans are in and finally they have decided its a 5 inch spot of melanoma....they are talking surgery...wondering about something...can they radiate the intestines? She is weak and no longer in the chemotherapy trial ( heavy duty stuff)...just wondering...

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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KellieSue's picture
Replies 3
Last reply 12/30/2010 - 7:30pm

After finishing my second clinical trial(ALT-801) on Dec. 17 I had my CT scan on the 28th.

My neck nodules all look stable(thyroid involvement) but there seems to be some new lung nodules in both sides. We're not sure if they were there before, we never saw them but they could have been small I guess?

My oncologist seemed pretty bummed considering after my 1st trial I had immediate response, everything was either gone or very much shrunken.

He's not completely convinced the lung nodules couldn't be acting up in response to the treatment and with my next set of scans in 4 weeks could be completely gone. I'm really really really hoping that is the case as my neck has gotten swollen on the outside qutie a bit since finishing treatment and that doesn't seem to be bigger at all on the scans.

It's just a little hard to take to hear there are some new things on the scans when I just finished treatement. I have my Brain Mri today just to rule that out. Of course I've been convinced as of late that I have something in the brain. Some little headaches that come and go, forgetfullness, writing the wrong check to the wrong person with the wrong date. I know all of these things are normal everyday occurances, it just makes my mind go to bad places when I'm dealing with this crap. I know you all understand where I'm coming from.

Anyway, headed to brain mri now, hoping that this is all a product of swelling and the treatment still working. Thanks for reading my novel.

 

Kellie, Stage IV hoping to be NED?

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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nicoli's picture
Replies 4
Last reply 12/29/2010 - 10:42pm
Replies by: nicoli, truwill, bestday

Hi. I left this forum joyfully over the summer due to NED status and hoped to never return. But here I am again because we found 3 small lesions on my scalp. One turned out to be a cyst common to graft sites, one biopsied melanoma, and one is to be biopsied tomorrow. I freaked at first but I am okay now.  Still stage 3B as the lesions are very close to the original tumor site.

QUESTION: My onc is talking radiation to my scalp to try to kill cells. Of course, radiation most likely will not kill all the cells in that area and more surgery may be needed in the future if a recurrence occures again (that sounds funny LOL). My surgeon says if the scalp is radiated he can never again do surgery as the thin scalp skin will be too fried.  Anyone here ever run into this issue?

BTW, I really appreciated the Stage 4 Roll Call of the UnDead. It encouraged me so much.

Nicki, Stage 3B, Dx 12/29/2009,  Almost one year survivor!!

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

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truwill's picture
Replies 2
Last reply 12/29/2010 - 10:17pm
Replies by: nicoli, Dynasysman

I was just given this site by the Regional Cancer Center of Hunterdon County. I was glad to find the site for Melanoma Research. It's nice to know that other people are fighting this type of cancer. I never thought I would be a patient, but I am. I just went through breast cancer with my mom who is 85 and never once complained about her situation. God bless her, she has to care for my soon to be 90 year old dad who is losing is memory. I've lived and helped them with their daily lives for some 5 years now. Now I'm the one my mom and dad are concerned about. I went through a rough patch with this cancer on my head and those women around me in work and personal life can't believe that a woman can get this type of cancer.....There remarks were, "How did you get that on your head, you have all that hair...doesn't that happen to bald men or men who have little hair. They just can't believe that women are just as much prone to this then men are. I'm living proof that you don't mess with this and you get it checked out when you notice it. I was too involved with my work to take the time to go see a doctor. Worse yet, I work in Pharmacy and watch people come in everyday to my work to buy over the counter drugs and RX drugs to make themselves feel better.  Now I'm left with a spot the size of a baseball that has no hair and will never grow any and a rather sizable dent from the depth they had to go to remove the cancer. I have no feeling in this area at all and little behind my left ear and neck where they took the nodes. And this is all due to the fact  I ignored the SIGNS....Now the question for anyone that can help me is what can be done at all too my head. Am I destined to wear a wig for the rest of my life....or is there some procedure I can have to cover this huge spot....My doc came up with tissue expansion under my scalp. This sounds and feels painful.... IS THERE ANY OTHER OPTION FOR ME AND OTHERS LIKE ME....I'M HOPING I CAN GET SOME INSITE TO THESE....

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I'm posting for a family member that is Stage III and soon will undergo ELND (after the sentinel showed a microscopic amount in one).  Hopefully the ELND will not show any more spread but if it does, I wanna help her make sure she is getting the best treatment she can. It doesn't look like NV has a NCI center. If it did, maybe that would be a good place to go. How does she make sure her onc is going to fight her life in every possible way? How do we make sure he's aware/active/literate of the phast III trials going on and will refer her if appropriate? 

Immediately is there anything she should ask the onc-surgeon regarding the ELND. Are multiple ways this can be done, are there speical scans that can be done during the surgery to make sure they are taking what they need. It seems like I read it really does matter how good the onc surgeon is performing the ELND. How can she make sure she's in good hands?

 

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