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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GeeCee's picture
Replies 6
Last reply 2/24/2014 - 1:25am
Replies by: GeeCee, Anonymous, Charlie S, jim Breitfeller, POW, Janner
Hi, I'm trying to find detailed survival and adverse event statistics so I can advise my stage IV 70 year old fathe with metastatic sites in the liver and both lungs.
 
We're trying to decide whether to start chemo (Bacarbazine) whilst waiting for another liver biopsy looking for any mutation (the first biopsy missed all cancerous cells!). We expect this to take 4 weeks (in the UK on the National Health Service).
 
I know that Bacarbazine is ineffective in 85% of cases! but that's for all patient groups! what's its efficacy for 70 year old men?
 
Similarly, Bacarbazine is considered well tolerated, but again that's for all patient groups, my father is not in good health. What are the instances of adverse events for him likely to be?
 
Can anyone point me at studies that publish these detailed statistics please?
 
Many thanks.

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kpcollins31's picture
Replies 8
Last reply 2/24/2014 - 9:51am

So I had my surgical follow-up earlier in the week... healing really well, feel great. We discussed the biopsy results, which were confirmed as melanoma (metastasis to the small bowel). Margins were tested and clear. In addition, my surgeon removed 20 lymph nodes in the region... one of which tested positive for melanoma. Bottom line is I am now stage 4 NED.

We discussed treatment options... when you are NED, they are fairly limited. Interferon, clinical trials, or watch and wait. I chose watch and wait with the 3 month scan frequency and I feel very comfortable with it. Am I crazy? I fully expect to have a recurrence at some point... not sure if it will be 3 months or 3 years (or 30 years for that matter), but I hate to start firing my treatment bullets too soon. I do not believe interferon is effective. Some current clinical trials seem to be showing a lot of promise, but I do not want to take something now that might rule out a better treatment down the road. My thought process now is to get my body strong again following the surgery to prepare for the next battle. Any thoughts on this approach?

Kevin

 

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Anonymous's picture
Anonymous
Replies 5
Last reply 3/7/2014 - 1:23pm
Replies by: SBeattie, Anonymous, mau, sofistef, Bubbles

Hi everyone, say, has anyone experienced a super dry mouth while on yervoy OR nivo OR both? I'm not finding anything 'outstanding'  re: this for either drug...thanks so very much...

 

Sally

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Maureen038's picture
Replies 6
Last reply 2/22/2014 - 7:44pm

My husband is on the ipi/nivolumbab trial in Pittsburg. Since his third infusion the first week of December, he developed hemolytic anemia probably due to Yervoy. He hasn't had any drugs since except steroids which he has been off of for almost three weeks. His hemoglobin level is 11.6 now which is great. His scans were stable. Two lung nodules grew a few mm while two lung nodules shrank a few mm. That's great news considering he's been off the drugs for almost three months. We are waiting to hear if he can start nivolumbab next week which he would receive every two weeks for 48 weeks as part of the phase one trial.

My concern is that Bill has been tested for PD1 expression and it's negative. I know that about 25 percent of people who don't have the expression respond well, but what if he doesn't? We have already been told that it wouldn't be safe for him to have yervoy again. Being Braf wild type, it terrifies me what drugs are left. He has done HD interferon and the ACT at NIH. Any advice would be appreciated. Thank you for your support!

Maureen

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gaby's picture
Replies 6
Last reply 2/25/2014 - 1:15pm

I'm really scared. My husband was diagnosed in 2012 stage3a melanoma , because he had micrometastasis in the sentinel node , the rest (12)  were clean. He had in 2012, 38 years old. He started in October 2012 with high doses of pegylated interferon for two months and after that continuous average dose to date. He was positive despite the side effects of pegylated interferon and was determined to complete the two years of treatment. He had from the diagnostic CT every 6 months thank God for all normal except when some nodes increased in size. So the oncologist  decided to make a pet. Yesterday I got the result of my husband's pet. The result is very bad, there are many hot spots in the pelvis iliac chains. I am very distressed.  As can be? Almost two years ago on her 12 nodes removed, only the sentinel tested positive with micrometastasis, the rest clean ... and now almost 2 years later again melanoma? or is another primary melanoma? now is stage 3 or 4? what will be the decision of the oncologist?  The prognostic is  going to get worse?

thanks to all

 

gaby (from argentina)

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suzette12's picture
Replies 3
Last reply 2/21/2014 - 1:11pm

Hello,

My husband was diagnosed in November of having stage four Metastatic Melanoma. A very small spot found on his left lower lung and a lesion on his spine.  The spot on his lung was sent for a biopsy  but it was so small that they cannot determine if he carries a melanoma gene.   He is now on Yervoy treatment.  He has had two infusions and is having terrible side effects.  In fact, they had to cancel his third infusion this week because of his side effects (swelling in the ribs-supposedly caused by an increase in the growth of the lung tumor which is attaching to nerve endings), eye irritation and rash).  His pain is over the top.  No plan to remove the tumor, they simply put him on a steroid to decrease the swelling.  Can anyone relate with these side effects and are they normal?  We live in a small town with very little experience of this disease and Yervoy treatment.

Any advice would be a blessing.  I'm very scared for him (us).

Thanks.

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sunshinlilyrose's picture
Replies 31
Last reply 2/24/2014 - 11:26pm

Hi all,  so I had a weird growth  on my lower hip for a while and finally had it biopsied. My primary called me yesterday to tell me it is melanoma and told me to see a Dermotologist with a speciality in skin cancers. She faxed me over the pathology report but I don't really understand it.  I would appreciate any help deciphering it.  I also found out I am 7 weeks pregnant and am wondering if this is going to hinder any additional tests I may need.....smh....very stressed.  Ok, this is what my report says

malignant melanoma, superficial spreading type, invasive to level 2 and a measured thickness of 0.4mm, arising in the background of a compound dysplastic nevus with severe atypia, close to lateral and deep margins. ( please see consultation report from dr Martin c. Mihm of Harvard )

ok so above is exactly what mine said, including the parentheses, which btw I did not get a copy of that report. 

Thanks all!!!

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mau's picture
Replies 18
Last reply 3/2/2014 - 10:19am
Replies by: ReginaTink, KRob, Anonymous, Charlie S, mau, Bubbles, ecc26, kpcollins31, Mat

I am wondering when others have decided not to continue at their job. 

I am currently on medical leave (public school teacher) and have previously taken short leaves for surgery or treatment. I have been stage iv since 2001 with 7 years NED following a vaccine. Dealing with tumors (mostly subs) for past three years. Most recent tumor in cavity where uterus was removed in2012 due to tumor. AntiPD1 , yervoy and radiation in 2013. Tumor stopped bleeding and shrank by a cm and stable between Dec scan and recent. 

So,  does one return to work when tumor stable or not since who knows how long that will last?  If it ends up being a good seven years ahead I will want to be working. But if it reoccurs I will not want to leave a class mid year. 

What have others chosen?  I know it is a personal choice but I am curios how others live along this path.

Maureen Elise

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quilter's picture
Replies 5
Last reply 2/22/2014 - 3:14pm
Replies by: POW, hbecker, Anonymous, Gene_S, Fen

what do you do when you are physically worn out from caring for a cancer patient. My husband has melanoma in the brain (several tumors) and is suffering form extreme fatigue and muscle weakness we think is due to yervoy. I am ready to collapse from the exhaustion as I have to get up every time he gets up--even several times a nite. Are there any care places that actually care for someone fighting cancer? I'm in NJ.

 

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Anonymous's picture
Anonymous
Replies 3
Last reply 2/20/2014 - 9:28pm
Replies by: Anonymous, Brent Morris, POW

does anyone have experience with yervoy muscle weakness and fatigue? both hit my husband hard after the 3rd does and now after the 4th even more. His legs just give out on him. How long do these side effects last? I can't find info on this anywhere?

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POW's picture
Replies 1
Last reply 3/10/2014 - 1:19pm
Replies by: Gene_S

Does anyone know how Aldakota is doing? Last I heard, he had lepto and was considering going to MD Anderson for intrathecal treatment. If you are in contact with him, please let him know that I am still praying for him every day.

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JerryfromFauq's picture
Replies 4
Last reply 2/22/2014 - 2:43am

Does anyone have experience with laser thermal ablation of brain mets?   (or of any other mets?)
 

http://clinicaltrials.gov/show/NCT01736722

  Purpose

The Methodist Hospital Neurological Institute is conducting a clinical trial for patients suffering from Metastatic brain tumors. The objective for this study is to evaluate the safety and feasibility of a MRI-guided laser thermal therapy during a real-time MRI guidance for the treatment of brain metastasis.

Patient will undergo laser therapy using the MRI scan to plan the treatment and ensure proper placement of the laser within the tumor. The tumor will then be heated by the laser and monitored by study physicians through the real-time MRI to see and control temperatures in the tissue. One in place, the thermal laser will then surgically remove the lesions. After the procedure, post treatment MR images will thenbe acquired for the determination of the effective treatment region.

 

http://www.visualaseinc.com/.../woman-is-second-in-n.../

http://www.visualaseinc.com/.../woman-is-second-in-n.../

I'm me, not a statistic. Praying to not be one for years yet.

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Socks's picture
Replies 13
Last reply 3/1/2014 - 12:40am

Finally got the results back from last week's WLE and SNB.

WLE shows they got all of the melanoma in that area: everything else is clean, so they can go ahead and put a skin graft back there (it was on the back of my head) and that can start healing up. I am so ready to be rid of this damn bolster, you have no idea. (Well, some of you probably do. ^_^)

The SNB though... they took 4 nodes from 3 sites in my neck, and every single node came back positive for cancer. So next Tuesday is the dissection (and the skin graft for my head), and we go tomorrow to discuss what-all we do from here (besides the surgery). There'll be a CT tomorrow, too, and I'll have an MRI and maybe a PET at some point, but that's a bit harder to schedule (we're essentially sneaking in the CT scan).

My nodular melanoma was 8.40mm at initial biopsy, after only a couple months' of growth. I was clinging to the no ulceration/satellite lesions and low mitotic rate for hope, but with the news that it's on the move, I'm thinking we're probably looking at Stage III or IV here? I'll ask for sure about the staging tomorrow, of course.

I just could use a fill-up of the hope tank here.

Oh, there is one dodged bullet: they took a chest X-ray on our first visit there and that shows no evidence of lung nodules or metastasis at all, so no matter where the melanoma's wandered off to, it hasn't gotten to the lungs (yet anyway).

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JoshF's picture
Replies 22
Last reply 2/23/2014 - 6:43pm

It's been a long road since I was desperately posting in Aug/Sept. For those of you who have been following I opted to do Promtheus Labs Trial/Study of ipi + IL2 randomized combo after recurrence in rt cheek and ultimately mets to lungs. Went through 4 doses of ipi...side effects were itchyskin/rash & hypothyroid which we're still trying to get under control. Then did 2 rounds of IL2...took 11 of 12 bags each time...rough treatment but I was well prepared after hearing from some of you notably Jerry from Fauq and Rebecca & Bob. I've been out of hospital 3 weeks now...feeling pretty good.

I had Pet scan Monday and received results  yesterday. Lung nodules gone...NED!!! I was shocked and relieved. There was mild uptake in rt cheek but doc said this is consistent with scarring/healing. Still makes me nervous...that's where it all started...and I had surgery in September. That sound right? I get aggravated with myself because this is news we all want to hear and though I'm happy...seems like I can never fully accept it. 

I'm pulling and praying for all of you out there...this is one tricky disease. I know there's some promising treatments on horizon and my wish for 2014 is that they continue to come to fruition and benefit all of you courageous warriors.

Best

Josh

Let's work for better treatments....for a cure!!!!

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AnitaLoree's picture
Replies 8
Last reply 3/2/2014 - 2:02pm
Replies by: HopefulOne, POW, AnitaLoree, Anonymous, Michelem, arthurjedi007

Anybody out there with invasive melanoma in spine?  Would appreciate advice/experience with treatment. Husband had no serious symptoms; just short term onset of tingling fingers, mild numbness rt hand, very slight weakness rt leg. CT showed invasive tumor top of spine, C1-C3.  Surgery to resect as much as possible Stage IV 3 mo ago.  Just finished focused beam radiation which should buy him some time.  Considering some type of chemo if qualifies; is BRAF neg.  Unknown if this is primary tumor or metastasis.  Done extensive on line research, spinal cord mets rarely mentioned. So glad I found this MRF site.  So wish I could wave a magic wand and banish this disease from all of you. Tough situations, tough fighters.

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