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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Lisa13's picture
Replies 2
Last reply 9/18/2011 - 2:37am
Replies by: mclaus23, Napa K

I'm due for my third round of ipi next Wednesday. The closer I get to being done this treatment, the sooner I'll know if it's been working and or continues to work.

Today I started to feel a bit dizzy. Not at all the time - just waves from time to time. I also have an upset stomach - lots of stomach gas that rises up and makes me feel a bit nauseus.  Has anyone experienced this before??  I've also been experiencing acid reflux and burning in my chest which I also had with dacarbazine.  I've always had a bad stomach before cancer, but these treatments have made them worse! 

Any feedback would be greatly appreciated so I don't feel alone in these symptoms.

Lisa - Stage 4

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vickykay's picture
Replies 3
Last reply 9/17/2011 - 2:52pm

Hi, can someone explain BRAF mutation to me where I can understand . I had the BRAF and it came back negative. What does this mean for me?

Stage 3b - will start interferon Sep. 19th. Started interferon Oct.2011. Received three weeks everyday with very bad side effects. Stop high dose everyday and started shots. Had to stop after one injection, vomiting blood. Had Ct, came back clean.

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LynnLuc's picture
Replies 5
Last reply 9/18/2011 - 11:59am
Replies by: dian in spokane, LynnLuc, Anonymous, DebbieH

My Friend  Linda S ( Magnolia Springs) was put on the sister trial that I am on for melanoma that couldn't be resected ( mine was for NED pateints)...she has completed 2 twelve weeks of the anti PD 1 and peptides and has shown 30% reduction in her multiple melanomas, and no progression. Some melanomas are gone. She now begins the booster IV's of anti PD 1 every 3 months. She is the one in my picture with the shortest hair...although she now has much more hair!! Yes its awesome news!!

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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Jan in OC's picture
Replies 12
Last reply 9/17/2011 - 10:32pm

We have been on a roller coaster here in Texas.  Dirk had surgery to remove the large met in his brain on 8/19.  About two weeks later, he had some numbness and swelling on the left side of his face so spent labor day weekend back in the hospital.  Has finally seemed to recover from the surgery, but the latest MRI shows that even more brain mets have appeared and the mel is growing very fast throughout his body.  

Saw Dr Papa today and he wanted to start BioChemo right away...but there were no beds available...friday nights are tough!  So we will go in tomorrow and start...the combo includes IL-2, Interferon, Cisplatin, Vinblastine and Temodar instead of Carbo.  As soon as he is done with that, they want to do WBR to get those pesky brain mets under control.   

Dirk is pretty upset.  Dr "hinted" that this is our "last resort" treatment.  We cannot do the rest of theTIL trial unless his brain mets can be controlled....although the TILS are growing in that little petri dish...so there is still hope!

I don't know if I can even express what I feel, there is so much to deal with...I need any advice to help us get through the next 10 days....

Jan 

laughter is the best medicine

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Those people who are new to this bulletin board might not know that there used to be a thriving chat room here. It was so useful to me when I first discovered this place. I went in there and 'met' many of the people that helped guide me through my early days of interferon, many of them gone now taken by melanoma, and many of them just gone away from reading these boards.

I don't spend much time in there myself anymore, since it is so quiet, but I will often log in there and just minimize the window while I read the boards or check my facebook or news readers. And new people still come in there, sometimes even before they find these boards, and they are usually pretty happy to find someone to talk to who understands the diagnosis.

Anyway, Shelby has posted some suggested chat times in the chat room, so now when newcomers enter the chat room, they'll see some times listed when they might expect others. I hope this will help people who actually want to use the room find others of a like mind.

I see she's listed the times in Eastern Standard Time, each night at 8pm, and I'd like to encourage some of the long term members to try popping in there over the next few weeks to see if we can't encourage a chat room revival. I am often cooking dinner during the 5 O'Clock hour (I am pacific time) any of you night owls back east who like to get on late can look for me around 10 or 11 Eastern as well.

Dian

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Anonymous's picture
Replies 2
Last reply 9/17/2011 - 3:03pm
Replies by: mombase, jax2007gxp

Hi Jacki,

 

Saw an earlier post. How are you doing??? Did the doc take out any deep nodes?

Wishing you a qick recovery.

Mary

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cwu's picture
Replies 6
Last reply 9/19/2011 - 9:49am
Replies by: Anonymous, cwu, mclaus23

Hi,

I just joined this bulletin board because the informaion here is very helpful.

My father is 83 years old and he was diagnosed with melanoma in June 2010. His tumor was on the sole of his foot.  In July 2010, he had surgery to remove the tumor and at that time it was about 5mm. They also removed 3 lymph nodes in his groin area, two of which had melanoma. 

In May 2011, he started having lesions on the skin of the same leg.  These lesions started out small and have grown bigger and there are hundreds of them now.  The doctor put him in a clinical trial for the drug dasatinib ( a targeted chemo drug I think)  since he has the C-kit mutation.  He was on it for two months and the doctor said that it is not working since the lesions have gotten bigger.

His melanoma is stage IIIC. His lesions are still on this lower leg.  He has a couple on his upper thigh and one near the groin area.  All of his lesions are on the same side where the tumor is. Two weeks ago, he had CT scans of his pelvis and chest and the doctor said the melanoma has not spread to his organs.

The doctor is now recommending Yervoy for treatment.  We have alot of concerns about the side effects of Yervoy because of his age.  He has high blood pressure which he is taking medication for and has asthma but generally in good health for his age.  I know different people experience different side effects while on Yervoy but can anyone tell me if  they know anyone in the same age range who took Yervoy and what side effects they have? I guess I am asking whether he can handle the side effects at his age (whether it will be fatal).  We have to make a decision about whether we should go with Yervoy, Decarbazine, or no treatment.

I appreciate any insight you can give and thank you all for your help.  

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Anonymous's picture
Replies 2
Last reply 9/16/2011 - 7:30pm
Replies by: washoegal, lhaley

Hi,

This was written in a pathology report taken from a mole on my mid-abdomen.  I apparently have many of these moles. Is it malignant? Can someone kindly opine and suggest what next steps should be?  Should I be seeking a digital dermatascopy exam?

 

From report:

Diagnosis: Junction nevus, dysplastic type, extending to one lateral  margin.

Microscopic description: The dennoepidermal junction contains a melinocytic proliferation in which the melanocytes are disposed primarily in nests.  Many of  the melanocytes show mild cytologic atypia, bridge and fuse adjacent rete and are associated with a fibrosis of  superficial papillary dermis.

 

 

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LynnLuc's picture
Replies 8
Last reply 9/18/2011 - 8:36am

I am asking if anyone can tell me something about the dyes. I have done scans and scans for most of my life.

 

3 months ago I had a reaction and I itched and hived on feet, legs, truck, back face, and arms starting about 5 minutes after the CT scan. They treated me with a couple IV pushes of Benadryl and said next time I would need to be premedicated due to allergy reaction.

 

Yesterday I had my scan and I had to take Medrol 32 mg 12 hours before and then again at 2 hours before as well as 50 mg of Benadryl 1 hour before. The tech says the premeds usually always work in 99% of the patients...I drink 3 glasses of medium stuff that taste like gator aid...then after they do a couple run throughs in the machine they use a drip of Optiray 320. This time they started the drip and ran me in the machine and on the way out I was starting a serious reaction to the dye. I went into shock and it was an awful ordeal yesterday. Hives, itching, urge to vomit, bottomed out on BP , breathing trouble, blacked out, they pushed steroids and Benadryl in my line and some other things. They hooked me up to monitors and over a course of time  I had 7 adrenaline shots to the chest. I was trembling and shaking all over like Parkinsons.They had to monitor me so they admitted me and kept me on O2 and gave me zantac in IV as well. They wanted to give me Duladid but my hubby and I said no.

 

 I didn't even get to do my MRI or my Anti PD 1. My question is I had to reschedule my Anti PD 1 and MRI...and the nurse says I need to take the premeds again. It had to be on the first drip of the CT dye I had reaction....now I am scared because of the MRI dye...anyone know if I will end up in shock again??-  Dr W says I need to be certified as allergic to Iodinated  radio contract dyes and Optiray320 and I should never take the stuff again...why would I need to be premed again for the MRI? Isn't it also an iodinated dye?  It was so close to death yesterday and if one drop in my vein can do that what is going to happen if they use it again for the MRI? Do they have a substitute dye for people who are allergic?- Lynn

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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I am asking if anyone can tell me something about the dyes. I have done scans and scans for most of my life.

 

3 months ago I had a reaction and I itched and hived on feet, legs, truck, back face, and arms starting about 5 minutes after the CT scan. They treated me with a couple IV pushes of Benadryl and said next time I would need to be premedicated due to allergy reaction.

 

Yesterday I had my scan and I had to take Medrol 32 mg 12 hours before and then again at 2 hours before as well as 50 mg of Benadryl 1 hour before. The tech says the premeds usually always work in 99% of the patients...I drink 3 glasses of medium stuff that taste like gator aid...then after they do a couple run throughs in the machine they use a drip of Optiray 320. This time they started the drip and ran me in the machine and on the way out I was starting a serious reaction to the dye. I went into shock and it was an awful ordeal yesterday. Hives, itching, urge to vomit, bottomed out on BP , breathing trouble, blacked out, they pushed steroids and Benadryl in my line and some other things. They hooked me up to monitors and over a course of time  I had 7 adrenaline shots to the chest. I was trembling and shaking all over like Parkinsons.They had to monitor me so they admitted me and kept me on O2 and gave me zantac in IV as well. They wanted to give me Duladid but my hubby and I said no.

 

 I didn't even get to do my MRI or my Anti PD 1. My question is I had to reschedule my Anti PD 1 and MRI...and the nurse says I need to take the premeds again. It had to be on the first drip of the CT dye I had reaction....now I am scared because of the MRI dye...anyone know if I will end up in shock again??-  Dr W says I need to be certified as allergic to Iodinated  radio contract dyes and Optiray320 and I should never take the stuff again...why would I need to be premed again for the MRI? Isn't it also an iodinated dye?  It was so close to death yesterday and if one drop in my vein can do that what is going to happen if they use it again for the MRI? Do they have a substitute dye for people who are allergic?- Lynn

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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justlittleoleme's picture
Replies 6
Last reply 9/23/2011 - 12:33pm

Just curious, we are scheduled for surgery next Friday.  In all the reading I am doing, BRAF seems to be an important item to know.  Did you ask for the testing or did your hospital test automatically?

We don't know how strong we are until being strong is the only choice we have.

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dearfoam's picture
Replies 7
Last reply 9/25/2011 - 11:31pm

Hi,

I haven't posted here before, but have lurked a little while. I am taking care of dad who has stage 4 Melanoma (dx April 2011), with mets to brain and lungs among others. At least 20 tumors. We have had some slowed growth since after his whole brain radiation in late spring and 4 courses of 21 days on/ 7 days off Temodar (started 5th course this week). We see his two Oncologisits (Melanoma Dr and the Radio Onc) next week. Should find out if he has the mutation that goes with Zelboraf and wether or not Radio Onc thinks we should do more radiation, or if the others have shrunk enough to be removed with gamma knife, and if that is even a good idea.

Out of about 6 brain mets, two showed shrinkage (1/3 and 1/2) on the last MRI in early Sept compared to June. Two abdominal tumors (spleen and colon) had also grown according to same week's CT scan, but just by a few mm.

So we don't have the results in and don't knwo if Zelboraf will be an option, but I am wondering if anyone has had brain mets affected by Zelboraf?

For some background:

It's been a rough year having to retire a workaholic dad. We had some hard times where it looked like he was about to go any day. He'd had a lung collapse after getting the biopsy in April, then a bout with blood clots in both lungs in late May. He feels a lot better but has basically been on steroids since April. Trying to wean him off = bad news. He is also taking antidepressants, ritalin, blood pressure med, etc to help counter the Temodar/ deal with other problems and help him feel with it, motivate to read and talk, eat, etc. He is really lucky and not had much pain to speak of, just headaches earlier on before treatment was started in earnest.

I'm pretty concerned about everyhting, duh. Poor dad has no concept of what is really going on (major denial). Like, he listens and stuff, but only selectively repeats (and exaggerates) what works for him, which I appreciate and get on one level, but not so much where he is denying himself things. I appreciate his stubborness to give into cancer, but am kinda mad that he won't take advantage of the time "extended" to his life already. (It's better than it was since he has been on Zoloft and more of the dechadron.) He doesn't understand what treatments do and don't do, and that he will be on them indefinitely. It is really frustrating for us when he wants to move out of our house yet can't drive or think straight. Doesn't want to tell anayone things he'd like to do, because he is about to get all better "in a month or two" and go back to work, and not need to worry about his wishes...

I guess I am not alone in all this, but it sure isn't fun being the one in touch with reality!

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Anonymous's picture
Anonymous
Replies 12
Last reply 1/2/2013 - 3:50pm

Hi,

 

I want to be able to get the "best" results from my scan.

I would appreciate anyone who can recommend what I should eat up to my 6 hours of fasting before scans. If you can be very specific (what kind of foods ie: vegies, meat, etc) this would be very helpful

Thanks,

a scared newbie!

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AlanM's picture
Replies 4
Last reply 9/19/2011 - 9:24am

On Wednesday I had a 4 month follow-up MRI which showed a 2mm reduction in size of existing brain met from 7mm to 5mm. And probably more importantly, no new ones! Whew, what a relief. So it looks like the combo of gamma knife(in May) and ipi(started in August) has me moving in the right direction. I am starting to have some gastro issues from the ipi, but with this news.....it's worth it. 

Alan

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TracyLee's picture
Replies 6
Last reply 9/17/2011 - 3:39am

Hi y'all,

Has anyone had a side effect from either ipi (Yervoy) or BRAF (Zelboraf) for the following?

The ball of my foot is terribly painful. Feels swollen, hurts to walk, etc.

The heel of my OTHER foot is also very painful, swollen, and this now is moving up my entire foot to include the ball of my foot.

It feels as if I'm walking on rocks or hard ball bearings. I do have a call in to my podiatrist, but have never had an issue like this before.  The heel has been a problem previously, but only the heel.

Of course, it could be because I'm getting old and crunchy. MY 48th birthday is November 1st, and I will gladly take sore feet over major melanoma flairups ANY DAY. I'm happy to be able to walk, work, see my next birthday, etc.   :)

Thanks, wishing everyone a wonderful weekend.

TracyLee

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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