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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KerriM's picture
Replies 1
Last reply 10/14/2014 - 7:13pm
Replies by: Janner

After posting my story and reading others stories can anyone tell me why some patients have a lymph node biopsy at state IIa/b and some don't. I just had a WLE twice to remove it all....now I am nervous that maybe I should have had something else checked. When I was first diagnosed I went to a general surgeon for removal of the mole as I had two negative biopsies so when it came back I was surprised. I now see a surgeon who specialized in Melanoma (Just had three WLE last week). Now I am nervous after reading that maybe I should have had more testing?

 

Also - Does anyone else feel like they don't want to mention any small changes to their derm at their 6 month check ups because they have turned into a pin cushion? I can't believe I even feel this way and don't want to tell him about changes...am I nuts?

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Anonymous's picture
Anonymous
Replies 7
Last reply 10/20/2014 - 11:13pm

This horrible disease has claimed another life…

On October 5th my father in law was called home after a lengthy 10 month battle with Melanoma.  I have posted on here anonymously a lot throughout this journey and have come to this board to learn valuable insight and to keep up on how everyone is doing.  It became my way of coping at times.  I want to say thank you to each and every one of you that participate in the discussions and even just come to read the posts. 

A little history…

My father in law was diagnosed in January 2014.  He had complained to his general practitioner that he had felt a lump below his right armpit last spring and the advice was “let’s watch it”.  By the December it had grown, was hard and bothersome so they scheduled a surgery to remove it the first week of January.  By the time they removed it, the tumor was the size of an orange.  The plastic surgeon also removed a mole off of his stomach and determined that was the primary.  He was then sent down to a surgeon who specialized in Melanoma.  She advised at that time he was at least stage 3, but would need to have a PET scan to determine if the melanoma was anywhere else. 

The first week of February we met with his Melanoma Medical Oncologists who gave us the results.  The melanoma had spread to his stomach, spleen, liver, pelvis, spine & right arm.  His LDH was in the 700’s and he was to start IPI immediately and they would test his tumor for the BRAF mutation.  By February 15th he was in the hospital due to the severe pain in his back.  Every doctor we saw gave us the same grim news that this was an aggressive cancer and with his tumor burden the odds were stacked against him.  They did a round of radiation to help try and reduce the tumors on the spine to help with the pain and decided to move him to a rehab facility.

In the beginning of March we learned he had the BRAF mutation.  He was also admitted back into the hospital because of the pain on that same visit.  Around the second week of March he was started on the MEK/Taf combo and was back in the rehab facility.  The doctors at this point are wondering how he is still alive.  By the end of March he is able to sit on the end of the bed and started using a wheelchair. 

In April he had a port placed and we also learned that he had a blood clot so they did the “umbrella filter”.  A doctor’s appointment in mid-April was the first bit of good news we have.  His LDH numbers are declining and by the end of the month he was able to come back home using a walker.  May continued with good news as the LDH was down around a normal range and he was able to walk with a walker, enjoy his grandchildren, spend time with his kids & wife.

The end of June we learned that his LDH number had climbed back up to over 700.  He was weaned down on his steroid and started Ipi two weeks after.  By the end of July his LDH number was still climbing.  We continued with the Ipi and in July had radiation on the tumor on his arm to help levitate some of the pain.  By August he was having so much pain walking, they did a round of radiation on his pelvis to help with quality of life.  His last appointment/Ipi treatment in September his LDH was up to 1800.  He had two tumors on his right side that were the size of oranges.  He was scheduled for another radiation treatment on those tumors and was to start Keytruda as soon as they could get it.  We noticed a cough on Wednesday and by Sunday around midnight it had caused shortness of breath.  The ambulance was called and he was taken to the ER.  At first they said it was pneumonia and transferred him to the cancer hospital he was to have the radiation at an hour away from his home town.  Tuesday when the doctors came in to see us, we were told that his tumors had increased everywhere and that they would finish the planned round of radiation to help with quality of life, but after that no treatment would be given.  They estimated he had weeks to months left. On Wednesday this all changed.  His regular oncologist informed us that his platelets were very low even after a blood transfusion and that he believed the cancer had moved to the bone marrow.  He informed us that at this point we were looking at a time frame of days to maybe a week and he would be moved into a hospice facility. 

As a family we discussed what his wishes were, had many good visits & watched him pass peacefully after 17 days in the hospice facility.  It was a long road and a hard fought battle & it will be a long road getting used to our new “normal” without him.  He was a good father, husband, friend, son & grandfather.  He never once complained or felt bad for himself.  He told his children in the beginning “no more tears, we will play the hand we were dealt”.

I ask that you pray for comfort for the family as they mourn the loss of a great man.  To all the fighters, survivors, & to those that have lost the battle, you will never be far from my thoughts and prayers.

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michaelinsocal's picture
Replies 8
Last reply 10/22/2014 - 7:01pm

I started my 12 month treatment back in May, 2014. Made it through three of four weeks of IV high dosage, couldn't tolerate more than 3 weeks. Then I took a two week break and started the once a week self shots.

My question is for those who completed the 12 months, at any time did they reduce your dosage based on the side effects? I've had my dosage cut three times during the first 4 months. I'm taking exactly half of the dosage I started out with. My dr reduced based on my blood work and severity (nausea, fever, diarrhea etc) of the side effects.

I'm also interested to know if onterferon worked or failed for you.

Thanks in advance for any feedback.

 

Michael

 

 

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DMU's picture
Replies 5
Last reply 10/14/2014 - 3:14pm
Replies by: Squash, Girl52, washoegal, DMU, Janner

Met with my surgeon and he's very straight forward. He told me if I had waited any longer to see him and the melanoma was deeper, he would be telling me to gather my Family and get my things in order for I may not be here. 

Well, I'm glad to report that's not the case at this time. He set my surgery up for 2 days from now. Sent me to get liver blood work, chest  X-ray,, and a mammogram. Marked on my back where the surgery will be. Said he doesn't foresee any problems.

thanks for your help.  I'll keep you posted with updates.

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FDA Approves Drug for Chemo-Associated Nausea, Vomiting

Mon, 10/13/2014

http://www.dddmag.com/news/2014/10/fda-approves-drug-chemo-associated-nausea-vomiting?et_cid=4205391&et_rid=657184103&location=top

elsinn Group and Eisai Inc. announced that the Food and Drug Administration (FDA) approved Akynzeo for the prevention of acute and delayed nausea and vomiting associated with initial and repeat courses of cancer chemotherapy, including, but not limited to, highly emetogenic chemotherapy. Akynzeo is the first approved fixed combination oral agent that targets two critical signaling pathways associated with CINV by combining netupitant, an NK1 receptor antagonist, and palonosetron, a 5-HT3 receptor antagonist, in a single capsule for the prevention of CINV.

 
"Patients receiving chemotherapy face a significant burden due to CINV. Akynzeo may help alleviate part of that burden of chemotherapy by better managing nausea and vomiting up to five days following chemotherapy," said Paul Hesketh, M.D., Akynzeo pivotal study lead author and chair, Lahey Health Cancer Institute and director of Thoracic Oncology, Lahey Hospital & Medical Center. "The results from the pivotal trials show that Akynzeo provides superior prevention against nausea and vomiting compared with oral palonosetron.
As a result, physicians may be able to help patients manage CINV with a treatment that works both at the time of chemotherapy administration, and up to five days following treatment."
 
The approval of Akynzeo was based on the submission of Phase 2 and Phase 3 trials with Akynzeo in patients undergoing treatment with moderately and highly emetogenic chemotherapy regimens for a variety of tumor types. The most common adverse reactions reported with Akynzeo were headache, asthenia, fatigue, dyspepsia, constipation and erythema.
 
CINV is one of the most common side effects of chemotherapy. Its management has been refined over the past several decades, but despite the existence of effective treatments and clear antiemetic guidelines, many patients still suffer from CINV, particularly during the delayed phase after chemotherapy. Studies show that patients often receive antiemetic drug regimens that are inconsistent with CINV treatment guidelines, which call for multiple-pathway targeted antiemetic prophylaxis. Akynzeo provides cancer care teams with two antiemetics in a single oral fixed combination capsule. A combination of an NK1 receptor antagonist, a 5-HT3 receptor antagonist and dexamethasone meets guideline recommendations for optimal antiemetic therapy following highly emetogenic chemotherapy.
 
"Helsinn is delighted with the FDA approval of Akynzeo and we look forward to a successful launch in the United States. We are proud of our long-standing partnership with Eisai and Akynzeo is the newest development in our combined efforts," said Riccardo Braglia, Helsinn's Group chief executive officer. "This approval offers patients access to a new treatment option for CINV prevention that is effective in preventing both nausea and vomiting, particularly in the delayed phase, following emetogenic chemotherapy regimens."
 
"The approval of Akynzeo represents an important development in the prevention of acute and delayed nausea and vomiting for patients," said Yuji Matsue, chairman and chief executive officer, Eisai Inc. "We are proud to achieve this milestone with Akynzeo as we work to further our human health care mission to provide patients going through what we know can be emotionally- and physically-demanding cancer treatment with an additional option for CINV prevention."

 

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

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Squash's picture
Replies 0

I am just wondering whether other melanoma patients get or regularly have tests on their CD counts ratio aka flow cytometry

If so are most patients counts usually abnormal or out of whack?

And finally if people arent getting tested why not?

No doctor in Australia has ever even given me or suggested a blood test or count of any kind.

In fact when I mentioned it to a melanoma specialist from the Melanoma Institute in Sydney he said he didnt believe they meant much.

Surely a flow cytometry gives valuable advice on how well the immune system is function.

All my blood work is great except for this one which i got done myself overseas.

So in my mind it would make sense to try and stimulate the immune function so the CD4 ratio is back to normal and NK cells are also normal?

 

 

 

 

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BrianP's picture
Replies 4
Last reply 10/15/2014 - 4:21am
jualonso's picture
Replies 11
Last reply 10/15/2014 - 4:29pm

Hi to everybody

Finally i have progression with Braf/Mek and we have decided to go through IPI.

Do i need washout period?

Some changes in diet?

Well, all advices are welcome....

Jualonso

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Girl52's picture
Replies 4
Last reply 10/13/2014 - 10:18am
Replies by: Janner, Linny, Girl52

If a path report says "metastatic melanoma" and they haven't found the primary -- and assumption is that primary is/was also in skin -- does this mean that the cancer spread from skin site one-to-lymph- system- to skin site two? Or can melanoma metastisize from one skin site to another with no lymph or blood involvement? And if so, does this make the metastasis any less threatening or easier to treat? Or is it not metastasis if no blood or lymph node involvement? Hope this makes sense.

Sis-in-law of person just diagnosed with metastatic non-cutaneous melanoma

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For those of you curious about an Alternative or possibly integrative approach to cancer, a free 11-part documentary begins airing tomorrow (Monday the 13th) at 9pm EST online.  The link below will take you to a trailer, if you watch the trailer and would like to watch some or all of the episodes, you would provide your email address and then you will be provided access to view the series.  I watched their last series and found it informative.  I also noted they didn't send me many emails (maybe one a month) until they started advertising this new series.  They are hoping you will like the series enough to buy it after the free period ends.  Last time, they left the videos available for viewing a full 24 hours after the initial release.  Not sure if they'll do that this time or if you have to watch "live".  There are several doctors, researchers and survivors interviewed.  Here's the link:

http://www.thetruthaboutcancer.com/fall_quest1.php

Cheers - Maggie

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cbs805's picture
Replies 4
Last reply 10/15/2014 - 4:04am

Does anyone know what can be done about this? My husband has been required each time to sign an ABN (Advance Beneficiary Notice that the scans likely won't be covered by Medicare) for his PET/CT scans. Medicare has always paid until this last one. I know there is a limit to how many they will cover so apparently that limit has been met and we now have to pay. Is there a way of appealing this denial and getting it paid by Medicare? Why does Medicare limit the number of PET/CTs a patient can have? What scans do they recommend instead of the 6 month PET CT? Thank you

CBS805

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Anonymous's picture
Anonymous
Replies 11
Last reply 10/17/2014 - 11:20am

Hi Everyone,

I post often, but I'd like to keep this anonyomous.  I have been stage IV for over three years.  The cancer battle is going well, but I am really struggling with side effects.  I do not respond well to rah-rah, cherish every day . . . I do well just plugging away (I smelled the roses before stage IV).  But recently I feel borderline depressed and my marriage/personal life/work/etc., are all struggling.  I have small children and nor much 'me' time, and I am always tired.

Any [realistic] ideas?  Thanks.

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kalisama's picture
Replies 9
Last reply 10/19/2014 - 12:29pm

I;ve been going through so much lately that i haven't had time to check in to the forums, but hope to be back around more as i contiue this journey with y'all.

I'm wondering if others with aggressive brain mets have also been diagnosed with Leptomentingeal disease? While I understand it to be somewhat rare, it now has me more concerned than the melanoma itself. I have been having increased CNS symptoms from numbness to urinary incontenance, as well as some cognitive breakdown. I'm not even sure what to ask my oncs about this new progression which is evidently very full on for me.

Last brain radiation failed, and the 2 largest tumors we are after have tripled in size in 3 weeks after cyberknife. we're going to try to go after them again this week. with the hope that the first Yurvoy infusion of 2 weeks ago may help the radiation work better this time. Starting to run out of options short of WBR, a whole other thread that I'm hoping to not have to go down here or in life.

Anyway, as always, I'm interested in your experiences and wishing you the best of health always.

Blessings and gratitude to all,
kali

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Patina's picture
Replies 2
Last reply 10/15/2014 - 7:29am
Replies by: bilben_r, Ginger8888

Hi,

Are there any Yervoy responders who have gotten shingles?  If so, what happened after shingles? i.e. Did you stop responding to Yervoy, respond less or was this just a side effect?

My Mom had a shingles breakout (she has had them before) and there are not a lot of Yervoy patients who have had them.  Wondering if her immune system is under duress and Yervoy may not be working as well as it has, or what...  

Thanks!

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Anonymous's picture
Anonymous
Replies 2
Last reply 10/15/2014 - 3:14pm
Replies by: JerryfromFauq

IF ANYONE IS AROUDN AND YOU WOULD LIKE TO COME TO CHAT A FEW OF US WILL BE THERE COME VISTI US.  WOULD LOVE TO MEET YOU.  LOOK FORWRD TO SEEING YOU.  

LOVE AND LIGHT

CAROLE K

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