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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DA Boston 42's picture
Replies 1
Last reply 12/23/2012 - 5:18pm
Replies by: NYKaren

Has anyone used Imiquimod with success? I think some people call it Aldera.
Thanks,
Don

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nsabel's picture
Replies 6
Last reply 12/23/2012 - 12:51pm
Replies by: nsabel, POW, Janner, Josh

My father had an initial consultation with his medical onoclogist who recommended that he start Temodar  immediately and discontinue it in 2 months if there is not a positive response. If Temodar is unsuccessful  he would then start Abraxane which the Dr liked better than Taxol for him because of the lack of steroids ( he has type 2 diabetes).  If that doesnt work he would go on Zelboraf. The Dr indicated that we should try everything else first because Zelboraf is most effective if combined with MEK inhibitors but this combo has not been approved yet so we need to hope that it gets approved by the time my dad needs it. Dr. said that Zelboraf is less effective when its used on its own or when the MEK inhibitors are added later.

Does this sound right? Has anyone had any success with Temodar or Abraxane? 

Dr was skeptical that he could take part in clinical trial due to previous kidney transplant and current immune suppression to prevent kidney rejection. 

Also can someone walk me through difference between protocol and off-protocal treatement? when are decision made to try one or the other?

thanks,

Naomi

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Colleen66's picture
Replies 7
Last reply 12/23/2012 - 7:53am

Today was my 2nd Day infusion of interferon.  Aches and pains more severe today.  Headaches seem to be under control.   Riggers started in pretty bad today with the highest pain point.  Took two ativan. Aside from me rotating tylonenol and ibuprofen.  Piled on four planets and after a couple hours rest fever broke. Pain is down and riggers are gone..

So thankful I'm getting thru this.  I hope all getting treatments are tolerating the effects the best they can.

Keep fighting.

 

Colleen 

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Anonymous's picture
Anonymous
Replies 2
Last reply 12/22/2012 - 8:04pm
Replies by: Swanee, NYKaren

My father has lesions in his liver, omentum, possibly lungs and other areas of his body.  He's been through cyber knife for a brain lesion, cyber and ablation for liver, and his now on yervoy.  After 3 infusions, he is having terrible collitis and has lost a lot of weight.  They are reluctant to take prednisone because of a terrible toe infection (maybe MRSA?), and one doc thinks that meslamine is contradindicated for someone with extensive melanoma in the liver.  Any suggestions?  I don't know how to help and he's so weak and everyone is so eaxhuasted.  Thanks

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awillett1991's picture
Replies 2
Last reply 12/22/2012 - 5:52pm
Replies by: NYKaren, Owl

I have really struggled with the side effects of Zelboraf, but here are some over the counter remedies I've had some success with.  This is by no means an all-inclusive list, and often times I've had to escalate to calling my oncology nurse and getting a prescription for something as it got worse, but maybe it will help somebody.

Cheers.

http://zelsideeffects.wordpress.com/

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NYKaren's picture
Replies 3
Last reply 12/22/2012 - 5:48pm

Hi,

This morning I took my 3rd dose of Zel.

I woke up feeling fabulous--then about 1 hour later while walking to train (I hadn't taken third dose yet) i started to feel a little light-headed.

It seemed to subside on the ride in.

I took my dose w/breakfast at 9:30.  At about 11:00 I started feeling light-headed again...almost as if I'd had 2-3 glasses of wine.  I usually get tingling in one arm because I sleep on it...now it seems that both hands are tingly, which I know is expected on Zel.

I also yesterday started taking that non-water soluable vitamin B...benfotiamine and Bethyl B12.  Probably not smart to start all at once.

Just spoke to Dr. Wolchok's nurse, and she told me to take my blood pressure... If it's ok, not to worry & they'll monitor me.

Has anyone else experienced this??

 

Thanks, Karen

Don't Stop Believing

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Owl's picture
Replies 3
Last reply 12/22/2012 - 10:00am
Replies by: POW, Anonymous, sharmon

Dear all,

I posted a couple of weeks ago and got really good input from you, thanks again!

My husband only had a partial response on Ipi (mets in lung, testicle and subqs disappeared, mets in neck area, parotis and 3 lymph nodes in abdomen left and progressing). We had a lot of discussions with the doctors since then. In the last weeks we experencied that doctors are only humans, make mistake, don't look at the whole picture etc. Luckily we moved home and have changed treatment center, which is now Kiel, Germany. The doctors there have been very helpful and were willing to discuss any options possible. The result is that they don't trust in a reinduction of Ipi, surgery would have no real benefits as the risks are to high for facial nerves and surgents are sure that tumors will come back. Finally my husband decided to start Zelboraf as it was recommended by the doctors. So he did last Wednesday. They did another CT staging Friday as the other one was 4 weeks old. CT shows only one met in abdomen (same size as 4 weeks ago) but two others (that were mentioned for the first time in CT of November) of at least 10mm had disappeared. Neck and parotis mets are also the same. This sounds very confusing to us because we do not believe that Z lets two mets disappear in between 2 days and all others have not changed. Unfortunately CT wasn't done at the same place as in November, so there was no comparison done. Well, nonetheless we hope the Z works well and we will ask doctors to make the comparison in January in order to understand what is going on.

Most of you know how hard these kind of discussions are and we just hope some calm days next week with our little daughter. She just turned one last Wednesday.

Wish you a peaceful christmas time!

Jenny

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becky15's picture
Replies 2
Last reply 12/22/2012 - 9:01am
Replies by: becky15, Anonymous

I am from the UK and was diagnosed with stage 1a 10 months ago.

I travel a lot to hot places and it is very difficult to find high level (over 50) SPF clothing in the UK, particularly in winter.  I will be in Sydney in mid-January at the start of a trip and wondered if anyone was from there and could advise a shop(s) that would stock such clothing.

I realise I could probably buy SPF clothing from the US or Australia via the internet but I would much prefer to try on before purchasing.

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susanr's picture
Replies 13
Last reply 12/22/2012 - 7:21am

You all may not know me.  I was not one of the "regular " posts.  I was not one of the "known patients or caregivers" on this forum.  I lost my brother Peter on 12/6/2012 to this horrible beast Melanoma.  I did not think I could re-visit this forum but needed to say good bye formally and wish you all well and hope to beat this very aggressive cancer melanoma.  He was only 45.  He had a wife, 4 small children, parents, and siblings.  He fought 3 hard years.  Nothing seemed to work.  We hit one brick wall after another. My brother never once said " why me", he never cried or complained.  Its sad to say that I am in the medical field and still could not save him.  I was a new mom at the time this beast was brewing in him.  He thought he had a splinter on his foot that was not healing.  I did not pursue anything for him thinking its just a splinter.  By the time it clicked in me...it was to late now that I look back.  I feel that I did not fight hard enough for him and hope he forgives me.  I was involved by being a new mom.  Normally I would be the biggest  "Pain" to my family for going to the doctor.  You all probably agree with me that nobody never expects this to happen.  I still feel like this is a nightmare but when I wake up...its not. I can say that my career in the medical field is over... I am tired of non-sense that the medical field brings and watching people suffer and you can't control it.

I feel so bad for any parent that has to bury a child.  It destroys me that my parents had to go through this.  I also feel for the poor parents of those children in Conn. that have to endure this nightmare.  My brother loved children so I know he is teaching them to fish right now....hoping he ain't smoking a cigar in front of them.....LOL !!!

During the last week of my fight for my brother one person on this forum was such a great help....and that was Mr. Charlie himself.  Charlie, I hope you read this and understand how much I appreciate your help.  I have this feeling that you know when somebody on this forum really needs an extra shoulder to lean on.  I kind of knew what the outcome was going to be but did not give for him.  The night before he passed, he told us that he was finished with doctors and hospitals.  I can at least move on knowing that we did all that we could under his wishes.  Charlie.....Thank you.  You are great!!!!!

To all the rest on this forum, Please be there for everyone.  I read some of the posts and there are some of us that really need that support form all of you on this forum battling this cruel, nasty, cancer.  Someone can post a topic and have over a hundred views but not one comment......even if you don't know the topic....just write that you are sending a thought or a prayer and that can help.  There are many of you that I have been following and have cried over some that have passed on.....My brother was not a member on this forum but I was and please support all who have died from this disease and who are still battling this beast.  He is now with all the angels.

Best wishes and keep fighting !!!!!!!!!!!  Lets find a cure !!!!!!!!! 

Susan

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Anonymous's picture
Replies 9
Last reply 12/21/2012 - 7:01pm

Hi all...I have been reading these posts for a couple of months now but this is my first time writing.  I am looking for some advice and thought this might be the best place to get it.  My father is 64 years old and has lived a very healthy life until being diagnosed with Stage IV melanoma.  The satillite tumor started on his back and was removed in July.  His lymph nodes were clear but in August a spot was found on his lung (traveled through the blood) and was removed in September.  His last CT scan a week ago showed NED so he is trying to decide what to do next.  One doctor in NY suggests he get CT scans every three months and when it returns start treatment then (ipilimumab or possibly Anti PD1 trial).  Another doctor in Boston suggests that he enter into a clinical trial now while he is NED, the trial consists on either Ipilimumab or interferon.  We are trying to decide the best path to take and are looking for any help or any suggestions?  He is feeling so good and healthy now that he isn't sure if he wants to feel awful for a year of the trial.  We also keep hearing that neither med in the trial have very good results, so is it worth it?

Thank you for any advice!

   

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awillett1991's picture
Replies 3
Last reply 12/21/2012 - 12:50pm
Replies by: Anonymous, POW, NYKaren

According to my Dr, some of the Ipi+zelboraf trials are shutting down because of liver toxicity issues. The liver just can't handle both drugs at once. This is where I am now. I finished Ipi #4, 2 weeks ago but after round 3 had to restart Zel because my heart met was growing like crazy. Have already had to stop Zel twice because of crippling side effects even though I was doing really well on it before Ipi.

At one point my ALP was almost 700, AST, ALT, and bilirubin were all high, but as of yesterday, ALP is down to 352, bili is normal, and the rest isnt too bad. I'm restarting Zel later in the week - I have to take it, but I'm a little gun shy. We are trying to get me to one week on/ one week off the drug. It's a scary place to be.

Amy

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lou2's picture
Replies 10
Last reply 12/21/2012 - 12:45pm
Replies by: lou2, POW, Anonymous, Janner

Doctor's office called to explain costs involved in surgery tomorrow.  It seemed very high to me - $1000.  Small city in the south, where one might expect not to pay a premium like a big city elsewhere.  Board certified dermatologist but not derm onchologist.

It is a small spot recently diagnosed for the first time.  Details:

Malignant melanoma lentigo maligna type

Breslow thickness 0.15 mm

Clarks level II

Mitotic rate zero

etc.

Note on pathology report that it will be a 20 mm excision.  This is quite a bit bigger than the spot.

 

And a separate question.  Seems like biopsy of melanoma that is restricted to the surface, not deep, might spread these cells into deeper skin layers.  Is this something to worry about?

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NYKaren's picture
Replies 7
Last reply 12/21/2012 - 12:44pm

Hi everyone,
I had my pre-Zel PET this morning (as soon as it was done I took my first dose).
Results were as expected however I have a nodule on my thyroid (I'm on synthroid, FYI) so Dr. Wolchok said an ultrasound & FNB are advised.
I must admit, I'm a little scared.
Have any of you had one? Does it hurt a lot? Can they put me out? Not kidding--after all the painful stuff I've been through, pretty stoically, the thought of a FNB in my throat scares me. I guess if there's Mel there its a good time to be starting Z.
All sharing of experience welcome.
Thanks,
Karen

Don't Stop Believing

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Jydnew's picture
Replies 7
Last reply 12/21/2012 - 8:54am
Replies by: POW, Snickers60, tuneseo, clientcommon, jupeter41, Anonymous

After receiving the DTaP vaccine last June, my husband got very sick - mild head cold, but extreme fatigue (like, can't get out of bed for 20 hours a day) for 12 days, until he got on an antibiotic and flonase and whatever it was got kicked by day 14.  He had his semi-annual oncology appointment in August and bloodwork was fine - first year with no scans.  In late September, the whole family had a very mild cold (we have 2 little girls), and he was completely laid up again with the debilitating fatigue.  This time, he go the antibiotic at day 4 and kicked it by day 7, but is still a little touch and go - still a bit tired, but who can tell if that's normal from having a 7 month old and a 3 year old...

Anyway, his doctor wants him to go to a rheumatologist because she thinks it's an immune problem.  He saw an ENT today and is being tested for mono, but even if it is mono, recurrent mono is an immune issue, so... does this warrent a call to the oncologist?  I don't know what for, but I think immune deficiency, and it scares me.

He's 10.5 years NED, stage iiia.

 

Thanks,

Wendy

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