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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Anonymous's picture
Anonymous
Replies 1
Last reply 11/13/2013 - 10:14pm

My husband was recently diagnosed with melanoma on his face, close to his eye. We went to Moffitt where we were told what the next steps would be....procedure to remove tissue to check margins. After the margins were clear he would have surgery to remove the tumor and possibly need a skin graft. Well, 6 days later, on our ride to Tampa (only 45 minutes) we get a call that the margins were not clear and more samples would need to be taken and surgery postponed. My husband is not a whimp but both of these procedures were terrible for him, just a local, meaning injections in his face, close to his eye. Why can't they give him something.....he will be out for surgery. Now the doctor is saying the area is larger, not necessarily deeper but  very likely grafting will be necessary. He will take it from around his upper chest. We are both fairly intelligent people, but I just feel like we haven't asked all the right questions. We really have no idea what to expect regarding recuperation, etc. Any advice ? 

Thank you!

imd

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Anonymous's picture
Anonymous
Replies 6
Last reply 11/19/2013 - 8:13pm

My mother was just diagnosed on Halloween in Baton Rouge Louisiana, with what the Doctors thought was  metastatic ovarian cancer, and a week later we found out that it has spread to her brain, and there are currently five tumors in her brain. Just last Friday the doctors decided that instead of ovarian cancer now they re read the biopsy and say it is melanoma,Need a new melanoma specialist! The doctors have misdiagnosed my mother twice and now I am looking for a new option, because this approach is very slow moving and our doctors seem to be confusing themselves. We are trying to go to MD Anderson. Any advice? Need to ACT FAST!!!! 

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Anonymous's picture
Anonymous
Replies 3
Last reply 11/12/2013 - 10:06am
Replies by: ecc26, Anonymous

Hi,

I had my sentinal lymph nodes removed on my right groin. I have a pimple there now and it's been there for a week and not going away. It also feels kind of lumpy and I don't know if that is the surgery or the pimple.

Has this ever happened to anyone else? Can a melanoma come back in the form of a pimple?

Thank you

 

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Ed Curran's picture
Replies 3
Last reply 12/19/2013 - 3:20pm

I had the tumor removed Oct. 18.

Type is Nodular

Ulceration is 10 mm in width

Mitotic rate is 10 per square mm

Thickness 7.5

Clark level is IV

The operation lasted two hr and he took out a good hunk which measured 13.2 x 4 cm dept of 2.7 cm.

 

I am meeting with my Oncologist on Nov. 19.  I am just trying to find out what I should expect  when I see him.  If I will need preventive treatment or not.  I get so many different answers I don't know what is correct or bogus.

Thanks for any help.

 

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nancyg's picture
Replies 5
Last reply 11/12/2013 - 12:49pm
Replies by: HopefulOne, nancyg, ecc26

My husband will be getting his last dose of Yervoy next week Monday...he has had basically zero side effects... At his last appointment his Dr said... "Next time you come in I want to see a rash or something so we know this is working...."  So we are nervous ... It is horrible not knowing what is going on in that body...the weird thing is that a few lumps have popped up... One on his shoulder and two on his stomach.  We do not know what to think !  He has his first CT scan  Dec 13.. After his 4Yervoy treatments to see what is going on... So I guess my question is did any of you have absolutely zero side effects-not even a rash -and the Yervoy worked???         

Thank you so much.... This is all so scary and frustrating..

Wishing you all the best,

Nancy

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As I approach completing three years in this trial I am developing wild type melanoma on my chest and face. I have had six knife fights since Ausust getting rid of it while it is still in situ. The speculation is that the BRAF at V600 E has been acting as a governor of a cassette of downstream genes that keep them in check, but once the drugs took over the BRAF, and inhibited it, it caused the downstream grouping to fire up wild type melanoma. This is not happening with my non-redhead cohorts. There is a hypothesis that since my red haired genes are not recessive, but active, it only affects red heads.

The rest are not developing this wild type melanoma. I would like to know if this is happening to other red heads in the trial. The question to be answered is whether or not the BRAF has returned to normal, and if so, by stopping the inhibitors, would it again start to govern the downstream gene grouping that is causing the wild type melanoma, and shut it down. Isn't it a grand thing to be part of this cutting edge of knowledge? I feel so fortunate to still be here and have my primary BRAF positive cancer to remain in check so long, but maybe it is time for an experiment within the experiment and see what happens if I stop the meds. I might run out of skin to stretch if this goes on too long!

The history of the world is the battle between superstition and intelligence.

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Hi all,

I am a melanoma stage 3 survivor. I started a cancer awareness company called WEAR AWARENESS to give back to those that are still fighting their cancer. Proceeds of every shirt sold goes to current cancer fighters for everyday expenses not covered by insurance. Things like co-pays, traveling expenses for long distance doctor appointments, etc. 

If you or someone you know is currently battling melanoma, go to www.wear-awareness.com and NOMINATE them. We need cancer fighters to give back to, and are excited to do so!

We have a melanoma designed t-shirt that is really cool. Our shirts are soft and durable. Check it out www.wear-awareness.com Below is a brief story of my melanoma, but you can find a longer version on my website. 

I was diagnosed a week after I graduated from college. I was 22. I had an immediate surgery to remove my melanoma which was on my back. The doctors biopsied a few lymph nodes in my right groin. I was devastated when they came back postive with cancer. I then had a surgery to remove all lymph nodes in my right groin. They had to cut a leg muscle and move it, then reattach it to reach all of my nodes. This caused my to not be able to walk for a month. I then did interferon for a month. I was the few 10 percent that lost over half of my hair from this treatment. I then decided not to continue with the 11 month treatment program.

THANKFULLY I have been cancer free for 20 months.

Thanks for reading! Prayers go out to everyone going through melanoma. I have been there...you will get through it and be stronger for that!

Casie 

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JerryfromFauq's picture
Replies 1
Last reply 11/9/2013 - 9:13am
Replies by: SABKLYN

The Molecular Targets and Therapeutic Uses of Curcumin in Health and Disease

 edited by Bharat B. Aggarwal, Young-Joon Surh, Shishir Shishodia

 

Would like to borrow  it.

 

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

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BrandyW's picture
Replies 9
Last reply 11/9/2013 - 9:22pm

My mom went to the doctor for lower back pain. When the did the MRI (looking for disc issues) they saw lesions on her liver and spine. She was told it was metastic melanoma. They did a full scan (ct) and we are waiting on the results until she gets back from vacation on the 18th. Also did a needle biopsy on her liver.   I'm almost certain she has rumors in her lungs as well because she coughs a lot.  I am going with her to her first oncology appt. What questions should I ask? 

I found this site while searching on info... Most of it looks pretty grim. Anyone here in a similar situation or know someone who is? Any help on treatment and what to expect is greatly appreciated :)

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DeniseK's picture
Replies 31
Last reply 11/15/2013 - 7:04pm

I am at a loss of what to say and so upset I can hardly stop crying.  I spoke with my doctor and the temodar is not working,  He said my disease is progressing too fast and I could die at any moment from bleeding in my brain and pressure.  My head really hurts and he wants me in hospice for pain management until the inevetible happens.  I am not ready to give up.  I know I am losing this battle but I am not ready to go.

I got a response back from Merck.  The doctor there said they are planning a study of the Anti PD-1 trial to start soon for people with brain mets, and they are planning a compassionate use program that would be fair for everyone in need to have access.  He did not give me a time frame but I don't think I will have time.  

I am so sorry that I am not staying positive in this time but I am trying so hard.

As always All my best to you all and thank you so much for all your support throughout my journey.

I am scared.

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Janet Lee's picture
Replies 3
Last reply 11/14/2013 - 12:01pm
Replies by: Michelem, BrianP, aldakota22

I think the last time I posted was a few weeks ago when my husband, Don, was having tremendous pain in his groin area. This is at the same time that our oncologist at Mass General was telling us that Don is having a positive response to Ipi. Primary care physician didn't think it was a hernia, and oncologist didn't think it was the cancer...

I drove Don to the ER the Tuesday after Columbus Day. They got his pain under control and admitted him. After a week of hospitalization, tests, and scans, they decided it was the melanoma and he had surgery to remove a 8 cm tumor in his inguinal canal. Everything around the tumor, including bone, came back negative. And he is now pain free!

Don finished his Ipi treatment at the end of July, and his second set of scans/MRI show all other tumors to be stable or shrinking, and no evidence of anything new, including in his brain (he's had SRS treatments three times and one brain met surgically removed). During our meeting this week with oncologist, he reported that everything else is still stable, and this one problem tumor was most probably a response to the Ipi, but the inflammation and placement caused the pain.

In any case, the tumor is now gone, Don is recuperating from the surgery, and we plan to spend a few weeks before Christmas in Florida. (We've planned and re-planned this trip several times since last May!) Then we will await the arrival of our first grandchild (a girl!) and be ready for the next set of scans around the new year.

Regards to all you warriors. Keep fighting!

Janet Lee

 

 

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Hello Everyone,

I am on my second day of Temodar and I am in so much pain.  My head back and neck is killing me.  These are all sights of my melanoma.  My throat is closing up again and I can barely talk or swallow again.  I didn't feel like this when I was on the Mek/Tanfinlar, it actually helped my throat and head.  I don't want to quit the temodar if this is normal.  It's like my mets are inflammed and causing me pain.  Has anyone done temodar with similar effects.  I feel like I am dying.  I have a call in to my doctor to see what I should do.

As far as getting gamma knife again, they won't do it because one of my brain mets is too close to my eye.  They will do external radiation if my vision starts to get affected.

Thanks for your help.

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Anonymous's picture
Replies 3
Last reply 11/9/2013 - 11:32am
Replies by: JoshF, Anonymous

All of the presentations were videotaped and can be watched here.  Please feel free to share the link with other patients or caregivers who might be interested.

http://media.surgery.northwestern.edu/Mediasite/Catalog/Full/6521fd9b9b174e1f8c5e567dc178c9a721?mkt_tok=3RkMMJWWfF9wsRonvqXNZKXonjHpfsX74%2BwpXaa3lMI%2F0ER3fOvrPUfGjI4DTstjI%2BSLDwEYGJlv6SgFTrXHMbpv1LgPWhQ%3D

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Anonymous's picture
Anonymous
Replies 3
Last reply 11/20/2013 - 9:20pm
Replies by: Anonymous, Ali

Hi,

I'm a stage IV patient who finished Ipi this summer (after having failed IL2) and it doesn't look like it's going to do enough for me so my doctors want me to try to enrol in a PD-1 trial. I had one lined up and was ready to sign the consent/start the prescreening when we found out our insurance won't cover anything if I'm in a clinical trial. We've been scrambling the last couple of days trying to figure out what to do. Our (or I should say my husband's as I have not been able to work for a couple of years due to treatment) income is too high to qualify for any of the financial assistance programs that seem to be available, but the financial office where the trial is being conducted said that the out of pocket cost to us for the first 4 cycles (about 8 weeks) would be upwards of $25,000. That's approaching half of my husband's yearly salary and is an impossibility.

In my research I found that with the ACA going into effect insurance plans are required to cover patients enrolled in trials beginning Jan 1, 2014, but when I looked further I found that our plan (through his employer) is one that will be grandfathered in and does not have to comply with that part of the law, so even if I delay (and pray) until Jan 1 I would not be covered. We have a wonderful cancer resouce center near us and I spent half the day yesterday with them helping me make phone calls to the state offices who regulate insurance only to find out that my husband's employer has a private contract (I'm not that clear on exactly how this works) so that the state has no jurisdiction over that contract and can't help me. Their suggestion was to enroll, start accruing charges, then when they're denied try to appeal, but even they admitted that wasn't likely to suceed on any significant level, which means we still can't afford a trial.

Now we're looking into dropping me from his isurance and possibly trying to buy a separate private plan for me, maybe through the state exchange for the ACA but are having trouble figuring out what the coverage for trials would be, if it's enough, and even if the hospitals I would need to go to would accept that insurance if we bought it. Add to that that it's likely going to be another $600-$700 a month I'm not sure we can afford that either. Again we (or he) makes just enough for us not to qualify for any of the discounts or subsidies offered by the ACA and there's even a chance that we won't be allowed to purchase one of those plans because I can be covered through my husband's insurance. I have a call in to a navigator to try and help sort this out, but I was also hoping that someone here might have some other ideas because we're running out of both ideas and time. 

Anything that could help would be very much appreciated. We're in NY state, by the way if that helps.

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Golda_'s picture
Replies 7
Last reply 11/13/2013 - 3:05am
Replies by: Golda_, Anonymous, Janner

Всем привет!

Надеюсь ваш браузер переведет мою тему.

Я с Украины. Моя мама больна меланомой. 2 года тому ей удалили родинку. Гистология показала меланому. 2 года никакого лечения не проводилось. Мама отказалась проходить курс химиотерапии.

На сегодняшний день у мамы метастазы в печени, позвоночнике и паховом лимфоузле. Очень быстро растут.

Единственное лечение которое сейчас есть - правильное питание и probiotic.

Я с братом самостоятельно изучаю все что связанно с меланомой. Несколько дней назад мы получили результат BRAF теста. 3 недели ждали результат (750 usd) Положительный. Купили 2 упаковки Zelboraf (2*3750 usd). В Украине не распространено медицинское страхование, да и дорого это. А для пациентов старше 60 лет еще дороже. Маме 64 года. Можем расчитывать только на свои силы.

Я готова купить или принять в дар хоть одну таблетку Zelboraf.

А так же я прошу Вашей помощи в приобретении этого препарата. Возможно в Америке он стоит дешевле? Я понимаю, что большинство из вас понятия не имеет сколько стоит этот препарат. Буду благодарна за любую информацию. Как купить? Где купить? How to return VAT?

original prescription не выписывают. Но есть заключение онкологической клиники с описанием диагноза и РЕКОМЕНДАЦИЕй принимать Zelboraf.

Так же, на этом форуме я впервые узнала о препарате Tafinlar.  Буду благодарна за любую информацию. Как купить? Где купить? How to return VAT?

 

Я верю, что еще немного времени и найдут препарат который сможет лечить эту болезнь как обычный насморк. Нужно только время!

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