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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NYKaren's picture
Replies 8
Last reply 9/20/2011 - 5:10am

Sorry I haven't posted since I went in last week...

Here I sit, scratching myself silly, giving you the high/low points of the treatment.  Going back in tommorow.

High points:  Never got the extreme chills/tremors.  They could definately happen this week, though.

Didn't get diahhrea till the day before last.  Lomotil took care of it right away.  I think it's because I went in constipated.  .   Hint, if you think you have to go, unplug yourself and get in there!

Didn't vomit.

Didn't halucinate, thank G-d.  I was really scared about that one.

NEVER had low urine output.  They were amazed.  I highly recommend bringing a case of water--it really helps.  Toward the end, when I couldn't eat, lived on water and bananas. Besides, my throat was so dry and lips peeling that I had to keep sipping water.

It was hard getting the Picc line in, they bent two (needles, wires, whatever they were)  By the end of the week, I wanted to rip it out myself.  There's got to be something else that doesn't itch so much as the patch/tape they use to secure it, and tomorrow I'll find out.

Low points:  My skin was lobster red (but didn't peel.)  Itch was and is so bad, nothing relieved it. was so swollen that at times one eye closed.   Not Doxipin, not Adarax, not Zyrtec.  In the hospital a shower followed by Sarna helped for about 10 min.  Ditto for home and oatmeal baths.  Just sent my hubby out for Tide Free & I'm rewashing everything today.  I just cut all my nails off and the skin is all peely underneath.  yuk.

Definate confusion which still hasn't cleared up yet.

 As mentioned, extremely dry throat and peeling lips.

Blood pressure did get low, so did potassium.  They're quick to remedy that.

I gained 35 lbs. of water.  As soon as the 2nd day, my underwear was so tight I had to cut it w/scissors on the legs & waist.  This time I bought 2 packages 2 sizes larger. Took off wedding ring and watch on first day.

I have to say, Dr. Sznol was there 1-2X/day, every day.  What a dedicated man.

Recovery: Exhausted and itchy.  Appetite came back pretty quickly, strength did not. Balance was horrible.  When we went for my check-up this past thursday, my husband parked the car, I got out my side, and promptly walked into a parked car.  When I saw Dr. S., he asked what % of normal I felt.  I said 60, and if he expected more, he was out of luck.  He laughted and said as long as I felt 60-70%, i was fine to go back in.  The important criteria was my labs, and apparantly they're fine.  We got home Sun. around noon, and I slept almost 'round the clock till Wednesday-Thursday.

I'm scared about the upcoming week because I know it can be so much worse.  Also, since I did ipi & had the requisite side-effects, I kept asking him if I wasn't having enough, because with ipi, it's believed that the presence of side effects means that the body is responding.  He said with IL-2, it's not the same and of course I did have some, just not the major ones.

Oh yeah,  I did in the hosp. & will continue to put Aldera on the area every night.  Interestingly, that skin is now painful, red and scabby.  They're very interrested in the result of the combination of the IL-2 & Aldera, and so am I!

So  I think that's it for now, sorry for not keeping up earlier.  I really lost interest in everyting, didn't even check Facebook.

One last thing, so grateful to have my husband there; he was wonderful!

be well everyone,

karen

 

Don't Stop Believing

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Wally's picture
Replies 9
Last reply 9/20/2011 - 3:03am

Hi all, I have posted on previous occasions and am now totally confused and possibly paranoid but I really do not know what to make of these developments so I need to rant and rave.

About a month after the malenoma tumor was removed from my right lung in April 2011, I started developing pain in my ribs, initially on the right side close to where the tumor was. In July I felt that the pain was no worse but consistant and very eratic and would move accross my ribs at times. Although initially the bones felt sore when I pressed my fingers on them, this is no longer the case. The pain is pretty severe at times and seems to stem from somewhere behind my ribs. It is like a severe stitch and other times like a stabbing pain and again at other times it feels as if it is on fire.

A Tc99 m MDP Three Phase whole body bone scan was done that indicated possible osteoblastic skeletal metastases with a proviso that recent surgery could also have been responsible. However, the pain continues. I was given a nerve block as the doctor who removed the tumor again indicated that the rib may have been damaged during surgery. Also apparent uptake left occipital need further evaluation to exclude metastasis in view of rib lesions

I went to my Oncologist on 7 September and a blood count was taken. This was clear / normal. Just to make sure a further scan was ordered. I only had a pre-scan to identify possible lesions. Nothing came up so no further scan done. The verdict being that the scan indicated a possible clean break of the rib during surgery.

I will now be have the ribs strapped (like rugby players have done when they injure their ribs) tomorrow (Monday)

My question is - can it take so long (some 5 months later still in pain) for a rib fracture to heal? Are the pains I am experiencing in line with a rib fracture. Surely any unusual movement, a cough or heavy breathing should induce pain. Surely pressing against the ribs should be a painful experience? I have none of this, just a constant pain that comes and goes as it pleases and is not isolated to one spot. This makes no sence to me. I do not want to sound like I am wishing that there is someting there but I just do not feel comfortable that they have done all they could to determine without any doubt whether or not I am disease free (NED) for now.

I just need to have closure on this topic and any feedback will be most welcome. I have had no treatment at all up to now, which is a blessing, but I am so afraid that there may be something lurking inside me that has not been picked up as yet and that any procrastination could be to my detriment. Is there anything else that can be done or is there anybody on this form that has had a rib tumor following a lung tumor. How was it identified - pain or any other way? Please help me.

I thank you all for your support. God bless. Wally.

The sun shines at the dawn of each new day even though it may not always be visible.

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Anonymous's picture
Anonymous
Replies 0

Is anyone aware of a Yeroy and MEK trial?

Or has anyone thought of combining the two drugs? can anyone offer any advice or knowlege to this,

 

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Anonymous's picture
Anonymous
Replies 0

Is anyone aware of a Yeroy and MEK trial?

Or has anyone thought of combining the two drugs? can anyone offer any advice or knowlege to this,

 

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Gene_S's picture
Replies 3
Last reply 9/19/2011 - 11:17am
Replies by: Gene_S, bs010kbb

Thursday evening at 9 pm (eastern time)

Vitamin D expert and international speaker

 Dr. Marc Sorenson will be interviewed in an audio

presentation online or by telephone.

Listen online at:        http://www.naturalhealth365.com/talkhour

Join us by calling the number below:
 
Date:           Thursday - Sept.15, 2011
 
Time:           6 pm (PST) / 9 pm (EST)
 
Call-In #:      760-569-7676
 
Access Code: 815676#
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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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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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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rbruce's picture
Replies 4
Last reply 9/19/2011 - 8:54am
Replies by: Anonymous, rbruce

I just received the following link from my niece who works for Enduro.  This is a small company working on vaccines, that will now include melanoma.  There is so much good research going on now after so many years of nothing new for melanoma.  I hope and pray that this trend continues and that soon melanoma will be a chronic disease ather than a terminal one.  http://www.businesswire.com/news/home/20110913005279/en/Aduro-BioTech-Announces-Grants

I am looking at 2 trials at UCSF that will be opening soon as my biochemotherapy is done with no disease progression, but no reduction.  They are trying to roll out an anti-PD1 trial in November but I feel like I need to do something between now and then.  Next scans are at end of this month which will help me determine what to do, and when. 

God bless all of you that are battlling this disease.  Just remember, there is hope for all of us as new treatments are found every day.

Robert

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Aloha everyone.

My name is Bob, and I was diagnosed with MM back in March of this year. Had a wide excision on the neck to remove what I have been told was a stage I. Another one popped up on upper left arm a couple weeks ago, and I will have to have it re-biopsied in a few weeks. Only reason for the delay is my derm. is out of town for a few weeks. I live on the big island of Hawaii, and have to fly to Oahu for treatments, and examinations. I have hundreds of the a- typical moles on me, and hardly a day passes now without changes appearing. You will  have to forgive my lack of proper terminology on much of what is going on, but I am learning as fast as I can from all of your posts. I have already met some of you wonderful people. I feel lucky to have found you all , and this site. I don't feel so alone with this process now, and that is a blessing that is beyond any words I can type here. Instead of just sitting here and looking into the jungle for answers, I now pop in here every day to educate myself further, and in just a few days I have learned way more than I ever wanted to know about this disease. Thanks to you all for allowing me into this special place, and sharing your experiences. 

Bob

We are one.

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MariaH's picture
Replies 5
Last reply 9/19/2011 - 8:11am

I know that so many people on this board have been wondering about Val, and  just wanted to let you all know that I got an email from her today.  She plans on updating the board as soon as she is feeling better.  I think she's a little beat up right now, so feel free to post some positive thoughts to her and let her know you're thinking of her -

Way to go Val!!

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Lori C's picture
Replies 4
Last reply 9/19/2011 - 7:24am
Replies by: MariaH, washoegal, Lori C, Anonymous

Along with a friend, I am hosting a benefit concert in honor and in memory of Will as the "yarzheit" (year's time) of his death approaches.  I wrote a lot about him here and hope it's okay that I share this:

Here is a blog diary on Will, and the event:   http://www.dailykos.com/story/2011/09/18/1017570/-Help!-%28please!%29?vi...

Here is a Youtube promo for it that tells a little about his life:  http://youtu.be/25hef8mb0SQ

 

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My 54 year old father was diagnosed with Stage IV melanoma this past April after a tumor was discovered in his knee.  He just finished up a 4 dose cycle of Yervoy- the FDA approved version, not a clinical trial.  The scans just came back and he has new tumors and his current ones have continued to grow.  His oncologist provided information about Dacarbazine and a new clinical trial with a drug called SCH 727965 which is in a new class of drugs caled cyclin-dependent kinase inhibitors.   After reading the research consent form,  I realize that the purpose of the study is to establish a safe dosage and that it is a very new treatment.  I was curious is anyone has had any experience with this trial or drug?

What have others next step been after Ipi did not work?  That is the only treatment that he has recieved and it appears as though there are alot of other drugs/options out there.  We just do not where to go from here, any advice would be greatly appreciated!

Thanks,

Meaghan

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/18/2011 - 7:56pm
Replies by: Lisa13, meaghanm8888@gmail.com, Anonymous, mygirlmaddy

Please let me know if you have had any serious side effects from ipi

Devon

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newmanmark's picture
Replies 3
Last reply 9/18/2011 - 4:46pm

Hello Everyone,

Its been a long time since I have posted on this website.  To be honest it wasn't easy for me to come on this site and read all of the various stories.  I'm still not sure it helps 100% of the time but I miss everyone I use to correspond with.  I aplogise for not posting more often.  I am now 4 months into my interferon treatment.  Its been tough but tolerable.  Nothing new has been discovered and I'm approaching a year from my diagnosis day!  I couldn't have done this without my friends and family by my side. 

The main reason I am writing is because I have recently been suffering from anxiety and I believe its because of the Interferon.  Did anyone else experience this?  If so I'd love to know how you treated it.  I'm currently on Cipralex but that doesn't seem to be helping.  It helps with the depression but not my anxiety.  Is there something natural that could help?  I'm not opposed to pharmaceuticals but I'd love to try a natural remedy first.

All my love

Mark

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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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