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.

Expand/ Collapse Topic
 
Replies By
View Topic
magnus31's picture
Replies 10
Last reply 3/3/2015 - 8:58am

Dear all,

I haven't been very active in this forum but I do find a lot of support and inspiration in reading through threads in here. So thanks all and stay positive!

After my initial IIIA diagnosis late 2012, I haven't really been blessed with good news. Lung mets were identified during summer of 2014 and I turned stage IV. After a non-responsive round of Yervoy with only mild side-effects, two brain mets were identified in December 2014. At that point I was put on Nivolumab/PD1 treatment as well as scheduled for gammaknife treatment in January 2014.

The thought of my head being fixed and inserted into a machine scared me immensely. At times, even more than the brainmets! But the gammaknife treatment went much smoother than I had feared. The sound of the radio and the fact that I could communicate with nurses through a microphone calmed me down. The scheduled 43 minutes passed by really quickly.  Three days after I worked out again at the gym as usual and recommenced my weekly runs.

Now. I had my first Nivolumab/PD1 evaluation last week. And finally some good news! All mets in lungs and brains had shrunk. Some even dramatically! For the first time since my diagnosis, I felt I finally had found some breathing space. Next evaluation is scheduled for April and I can only hope that the mets will have regressed even further by then.

Since this good news, I have finally dared to look forward again. Planned a move, started pondering a future career move, investing in a house...

But after few minutes of planning ahead, I find myself stopping and asking myself critical questions. Can I medically founded believe that PD1 will work for me in the longer term, just on the basis of a positive first evaluation? Is it reasonable to believe that this drug will keep me alive and kicking for years to come? Is me planning a long time ahead just fooling myself? Will I still be alive in six months? Dare I hope for six more years?

I am enduring no side effects at all from Nivolumab/PD1. Thoughts and stories on the PD1 treatment are welcome. Long-term survivor stories would especially have made my day!

 

 

 

 

 

 

 

Login or register to post replies.

Cyto's picture
Replies 3
Last reply 3/2/2015 - 9:57am
Replies by: SABKLYN, Anonymous, Cyto

Hello,

 

My mother (43 years old) was diagnosticed with a melanoma 1 month ago. Before the operation who will occur next week, he had to pass a echography and a scanner, all is ok (it is a good new ? as it is not always efficiency as i know, and here's the resultat, I'm asking a lot of questions, hope you can explain me :

 

Type of Melanoma : SSM

Deepth of Breslow : 4mm

Clark : Level 3

Ulcerated : Yes

Satelitte by transit : No

Mitotic rate : 2/ mm²

Regression : No

TIL : No

 

I'm paniqued for her, her melanoma is very depth (4mm), but the clark Level is only 3, this level it is a good prognosis factor ? I saw the mitotic rate is fairly low, it is good too ?

Also, clinical doctor has founded a lymph node at the neck, meaning it would be 100% positive ?

 

And also, its lesion is located on her external ear, which is not irrigated by the flood, so it is risked or considered as a extremity ?

 

Thanks.

Login or register to post replies.

tjc0912's picture
Replies 8
Last reply 3/3/2015 - 10:19pm

Hi all

I have not been on this site in a very long time but am now wondering if anyone has any advice.  My dad is 66 and has stage IV melanoma that he has been fighting for 2 1/2 years.  He has tried yervoy, IL2, anti-pd1, a merk trial, radiation and now is starting taxol/carboplatin...throughout all these treatments he has been very itchy (I'm sure part of the disease process as well) but im wondering if anyone else has dealt with this? If so is there any remedy that anyone can recommend? It is getting so bad he can barely stand it?

Login or register to post replies.

Replies by: Anonymous

Looking for a recommendation for an excellent dermatologist in the Minneapolis area.  Thanks

"Lord, Together We Can Handle Anything"

Login or register to post replies.

tomw65's picture
Replies 9
Last reply 3/2/2015 - 11:39am

I was diagnosed with stage 3 melanoma in Jan of 2015. I am a 70 year old married man with 3 children and just received my 1st of 4 immuno therapy infusions with 3 weeks in between treatments.looking to find support any where that I can through this journey. New to this site so just trying to find my way around.

hazel43green

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 8
Last reply 3/1/2015 - 9:47am
Replies by: SABKLYN, arthurjedi007, Anonymous, KMick, yazziemac

My partner went to his family doctor with a highly suspicious lesion on the bridge of his nose.  He never had a lesion there before. It grew quickly over 4-6 weeks before he saw the doctor.  It was ulcerated and bleeding, and black and blue in colour.  The doctor referred him for a biopsy.  The referral was dated for 3 1/2 months later.  We asked for a sooner appointment and couldn't get one.  The biopsy came back as positive for melanoma and a month later the neck lymph nodes came back positive.  

My question is-how long do most people wait to have an initial biopsy?  

Login or register to post replies.

sstech's picture
Replies 4
Last reply 3/9/2015 - 7:27am
Replies by: sstech, Mat, Bubbles

I have been on Opdivo treatment for 2 weeks and am continuing Tafinlar capsules twice a day for 2 more weeks. I know that the Opdivo is very new. I am only the second patient at M D Anderson Melanoma Clinic to be on this treatment. Just curious if there is anyone else on the Opdivo on this site that I can compare notes with. I was diagnosed 5/5/2012 and have been fighting like hell every since. I feel so blessed that the Opdivo was fast tracked through the FDA and is available right when I need it.

Login or register to post replies.

Hello

I was hoping to connect with any patients of Dr. Hogg who have Stage 4 melanoma.  My husband, Pete, is a patient of his.

 

Yasmin

Login or register to post replies.

Kdw2012's picture
Replies 6
Last reply 2/28/2015 - 9:16pm

I suffered two seizures on February 22. I have completed Yervoy February 5 they believe the Yervoy may have caused a flare of these tumors. These brain tumors have all occurred since November. I am now going to be starting Keytruda on Thursday March 5. 

Has anyone else had similar issues and if so what kind of success have you had with Keytruda and how quickly?

Kim Wright

Login or register to post replies.

MixtaJones's picture
Replies 7
Last reply 3/1/2015 - 8:59am

Hello everyone,

It has been a very long time since I have visited this site but I figured it was time to swing by and post something that should give people so hope just like many of the post I read.

It has been almost a year since I found a lump under my arm which led to a diagnosis of Early Stage IV Melanoma. I say early because it had spread to all of my lymph nodes in my upper left axilla and they were not able to remove all of the tumors. I did not have distant tumors but it had spread enough to get me to the stage IV classification. Most would say that is a bad thing but it was a blessing that I didn't realize till much later.

I had surgery to remove 22 lymph nodes under my arm followed by radiation which left me with about 7 tumorous lymph nodes in my collar bone area. Because I was diagnosed with Stage IV I was able to go straight on Yervoy and did 4 rounds that finished up on July 11, 2014. My 30 day scan showed that the tumors will still there and slightly smaller. The big surprise was at three months. All of the tumors were GONE!!! No sign of them! I just had my 6 month scan and I am still clear!

Even though I had 22 lymph nodes removed I have had not a single sign of lymphedema. even though I went through radiation and had Yervoy infusions I had very little side affects. Even though a year ago the doctor told my that I had a very tough fight ahead of me I am here alive and well. I know it is relatively early in the game to claim victory but I feel that cancer has lost this battle.

I know not everyone out there will have the results I have had. I know every ones situation is different. But for those of you who have just been Diagnosed and have read all the scary data out there please know that Melanoma is not a death sentence. For those of you that have been fighting this monster for a while, Please don't give up. There is hope and soon cancer will be a thing of the past.

Philippians 4:13 "I can do all things through Christ who strenghtens me"

Login or register to post replies.

mrsaxde's picture
Replies 5
Last reply 3/18/2015 - 9:26pm
Replies by: mrsaxde, Anonymous, Mat

I finished the treatment course with Yervoy in January. Went back for a post treatment scan a week ago, and the results are encouraging. Several questionable areas, including one on a lung, that were new in November, but weren't "hot" on the PET scan, are unchanged, and still not hot. I do have one area that was mildly hot ("warm" my oncologist called it) with an SUV of 3.03, on my back.

Throughout the treatment I've been dealing with the typical rash, and I've been on prednisone for over two months now. But, all through the time between the infusions, the rash was the only issue.

About a week after the last infusion, a pain developed between the bottom of my ribcage, and my navel. My doctor thgought it was due to the prednisone, and advised me to take Maalox. That seemed to help for a while, but soon it got worse, and became more widespread throughout my abdomen. Maalox no longer provided any relief.

For about a week now, I have been unable to eat much of anything. Almost everything I eat gives me pain, gas, diarrhea, and bloating. I was told to take Immodium for the diarrhea, and to help the pain. It helps, but not completely. It was also recommended that I try the BRAT diet (bananas, rice, applesauce, toast), but not even those are very tolerable, unless taken in very small amounts.

After that long introduction, my questions:

I'm wondering if anyone else who has been given Yervoy has experienced a worsening of side effects after the treatments ended, and if so, how long did it last before they began to subside? Also, does anyone have any recommendations about things I could try to eat? I've lost 10 pounds in just over a week.

Login or register to post replies.

Julie in SoCal's picture
Replies 6
Last reply 3/1/2015 - 2:54pm
Replies by: jbronicki, Julie in SoCal, Anonymous, Mat, Nell

Hi there Friends!

Well, I saw my Rock Star Doc today and he confirmed it; melanoma is back.  It's still small but it's growing (from rice grain to pea size is 3 weeks.

So, the plan is: Full set of scans (PET/CT MRI Brain) next week Wed  to see if it's gone anywhere else.and following that, Keytruda.

My options are to 1) resect the sucker and watch and wait to see if another one pops up, 2) reintroduce Ipi (I had a good response to Ipi the first time, seems reasonable I would have another good response), 3) do PD-1 -Keytruda.  I'm thinking I'll take the more global chance fpr

It's still early in my acceptance of all of this, but I know that this will mean major changes across the board, and It's going to take a while for my hear to catch up.  But it will, and it will be good.

Thanks friends for listening, and caring.

Shalom!

Julie

Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, IPI, PD-1?

Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, IPI, PEMBRO.

Login or register to post replies.

Teochasse's picture
Replies 11
Last reply 3/1/2015 - 3:35pm

I have been very hesitant in posting this since so many people are facing real uphill battles with this nasty disease but I would like to share a message of  hope for anyone who might need it  that it is possible to overcome this cancer against all odds.

I just have  found out that I have been downgraded to  only one PET scan a year since  I have reached the  5 year mark  since  being diagnosed with an extremely rare and aggressive melanoma.This is a major milestone for me since I barely survived a life saving emergency surgery  with a major blood transfusion in 2010 and I was being told basically to get my affairs in order shortly. In my wildest imagination I would not have dreamed   to live to see that day,but here I am NED 5 years on. I don't assume by any means that I am cured,but it still  feels amazing to have lived trough it all,  be still around and get a chance to further  move on  with your life.And yes, I  do get to  experience the Survivors guilt on occassions.

I wish all patients and their caregivers strength,courage and resilience, remember that you have every chance of coming on top of this disease as long as you live and  refuse to stop fighting.

"...life has a funny way of sneaking upon you.

and life has a funny way of helping you out when

you think everything's gone wrong and everything blows up in your face".

 

 

 

Teodora Chasse

Login or register to post replies.

This article came across my feed and sounded interesting so I looked for the trial.  Melanoma is one of the cancers they are accepting for the trial.  Doesn't say brain mets are a disqualifier and they think it will work on brain mets.  Phase I so you're definitely a "rattie" if you choose this trial but if I was a non-responder to Ipi or PD-1 I'd definitely consider it.  Looks like it's only in Chicago right now.

http://medicalxpress.com/news/2015-02-cancer-drug-pet-dogs-human.html

https://clinicaltrials.gov/ct2/show/NCT02355535?term=pac-1&rank=1

 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 3
Last reply 2/28/2015 - 12:09pm

I have melanoma mets in both lungs and in the bones through out my body ( lots in hips and spine and ribs). I have tried IL2 (no response) Braf Combo ( worked for about 3 months) and IPI ( no response) and now am doing PD1 which seems to not be working as well.... What drugs and treatments are out there and should be on my list to try? Any help in this matter would be so appreciated. I live in the US east coast.

 

Thank You

Login or register to post replies.

Pages