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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BrianP's picture
Replies 1
Last reply 10/17/2014 - 2:04pm
Replies by: Brent Morris

No specific mention of melanoma in this article but seems like it would be applicable.  Hopefully something like this will prove beneficial in combination with the already existing immunotherapies.

http://medicalxpress.com/news/2014-10-human-cancer-prognosis-newly-immune.html

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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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Girl52's picture
Replies 5
Last reply 10/17/2014 - 9:48am
Replies by: Janner, Linny, Girl52

My BIL had WLE and SLNB yesterday of tumor just above his left elbow. Surgeon said second path opinion concurred with first, with diagnosis of metastatic melanoma. But recent PET scan clear. Primary might be regressed skin tumor, surgeon said, and "I won't be surprised to find cancerous nodes, and won't be surprised not to." They'll also check for in-transit metastasis. When results available, I hope surgeon offers staging information and recommendation to see oncologist, as BIL has resisted finding out anything about melanoma or consulting an oncologist.

BIL, in his mid-50s, already has a stent in renal artery; high blood pressure; and atrial fibrillation. In fact, surgical team yesterday noticed the a-fib during procedure and asked if BIL was seeing cardiologist. He isn't. Does an underlying cardiac or other health issue make possible systemic treatment trickier, or harder to tolerate?

I have read that, with metastatic melanoma diagnosis but clear scans -- and with or without node involvement -- some patients take a watch and wait approach. But do many decide on adjuvant therapy?

What are chances that BIL's elbow lesion was the only metastasis from unknown primary....that there are no micrometastasis elsewhere that might be nipped in bud with adjuvant treatment?

 

 

 

 

 

 

 

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

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Patina's picture
Replies 4
Last reply 10/16/2014 - 9:18pm

More good news to share...

My Mom, who is stage IV with 25 brain mets treated, had her 7 & 6 month checkup after her her last treatments with ipi and gamma knife radiation. - No CT scans. Just MRI scans for her brain.

Everything is really going well. There are no new lesions and the brain mets are stable. Still no known cognitive issues or anything else to report. If things remain the same at her next MRI she will be cleared to drive some time in December. - 1 year and one day after her first treatment.

Keep your fingers crossed that these results hold. She can't wait to drive again. - Everything else is excellent.

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JerryfromFauq's picture
Replies 1
Last reply 10/16/2014 - 6:59pm
Replies by: Julie in SoCal

I will be late for tonights chat.  We were planning on chatting at 8 pm.  Some others may be here then.  i have to be out until around 9 pm.  Hope to jopin the chatters then.

 

Jerry

 

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

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penelope10's picture
Replies 2
Last reply 10/16/2014 - 5:54pm
Replies by: penelope10, Anonymous

I am a 36 year old male with a family history of malignant melanoma.  Since I was 17, I have seen a dermatologist and have had five excisional/shave biopsies that have all been benign. Over the last 19 years, I have been active duty in the US Navy and have moved 8 times. Because of this, I have never had continuity of care and seen a plethora of dermatologists. No pictures have ever been taken of my many moles, and it has usually been up to me or my wife to notice any changes. In September,  a CT scan noticed a 1cm non calcified nodule in my left lung and my radiologist ordered a PET/CT which I had yesterday.  Good news was the pulmonary nodule showed no hypermetabolic activity. But the scan noted the following..."There are multiple foci of increased hypermetabolic activity with associated dermal tissue thickening on CT images: right back at the level of T7 with max SUV of 5.6, right back at the level of L1 with max SUV of 2.9, left back at the level of T11 with max SUV of 2.6, bilateral upper flank regions with max SUV of 2.2 on the right and 1.1 on the left, right upper medial thigh with max SUV of 4.6. Recommend clinical correlatiom. Differential include infectious/inflammatory process, however, cannot exclude malignancy." I have normal looking moles at all of these locations. I am not asking your opinion on whether I have melanoma or not. My dermatologist will do that when I see him in two weeks. Until I see him, I was just curious if anyone on the forum has received their initial indication of melanoma via PET/CT which led to unsuspecting moles to be biopsied? Any recommendations for questions to ask my dermatologist with the above test results? Thanks in advance!

 

 

 

 

 

 

 

 

 

 

 

 

 

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Roncole11's picture
Replies 6
Last reply 10/16/2014 - 5:04pm

I have been diagnosed with metastized melanoma in my lung, I also have Crohns Disease and have been on immune suppression meds for about 15 years. Because of the Crohns, I am unable to take yervoy.

Does anyone else have this problem? I have been to Johns Hopkins, and the doctors there were not a big help.

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DMU's picture
Replies 3
Last reply 10/16/2014 - 2:22pm
Replies by: Anonymous, DMU

Someone wanted to know the diagnosis.

0.1mm Breslow thickness, Clark level 2, present at lateral edges

has anyone had a similar  melanoma? If so I would like to know how yours turned out after surgery.       Thanks

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tschmith's picture
Replies 10
Last reply 10/16/2014 - 12:29pm

Yesterday I finally got my first set of scan results since beginning Keytruda in July.  My tumors are shrinking! A soft tissue mass has disappeared. Some lymph nodes have gotten larger but I was told that this is common with immunotherapy and that they will hopefully shrink as well. No new mets. Got my info in a phone call so I haven't actually seen the radiologist's report yet.  My back tends to bother me in the L2 area where Melanoma fractured my vertebra, but there doesn't appear to be any changes. (Had surgery and now have 2 rods/6 screws.)  It doesn't hurt but gets stiff and tires easily. We discussed getting more physical therapy and some other options.

So...Keytruda is working and I'll get my next infusion on the 21st.  

smiley  That happy face kind of looks like me because my eyelashes and eyebrows have turned white since my third infusion.  :))))

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Anonymous's picture
Anonymous
Replies 6
Last reply 10/16/2014 - 12:25pm

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 7
Last reply 10/16/2014 - 11:55am
Replies by: Ed Williams, BrianP, Anonymous, Ginger8888, ecc26, mms7angels1

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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Leslie'sHusband's picture
Replies 6
Last reply 10/16/2014 - 8:53am
Replies by: Leslie'sHusband, Marianne quinn, Anonymous

Les had her CT scan at Duke two weeks ago.  She was supposed to get a PET/CT with contrast, but once again, insurance got in the way of what the doctors requested.  Anyway, they found a place on her liver, and a small spot on one of her lungs.  The doctors requested an MRI to take a closer look at the liver, but seem to not be excited about the lung.  We head back to Duke tomorrow for the MRI.  Here is what was written about the CT:

CT chest, abdomen, and pelvis with IV contrast

Comparison: Outside PET/CT dated 2/27/2014.

Indication: V10.82 Personal history of malignant melanoma of skin, eval
for metastases

Technique: CT imaging was performed of the chest, abdomen, and pelvis
following the uncomplicated administration of intravenous contrast
(Isovue-300, 150 mL at 3 mL/sec). Iodinated contrast was used due to the
indications for the examination, to improve disease detection and to
further define anatomy. The most recent serum creatinine is not available.
3-D maximal intensity projection (MIP) reconstructions of the chest were
performed to potentially increase study sensitivity. Coronal images were
also generated and reviewed.

Findings:
Chest:
There is a faint nodular opacity measuring 4 mm in the right lower lobe
(series 6, image 37). There is bibasilar atelectasis and scarring. There is
biapical pleural scarring.

The thyroid gland is normal in appearance. There is no evidence for
axillary, mediastinal, or hilar adenopathy. The heart is normal in size.
There is no pericardial effusion. The pulmonary parenchyma is normal in
appearance, with no abnormal pulmonary parenchymal opacities. There is no
pleural effusion. The central airways are patent.

Abdomen/Pelvis:
There is a enhancing lesion within the dome of the right hepatic lobe
measuring 1.7 x 1.3 cm (series 6, image 52). No additional hepatic lesions
are identified.. There is no intrahepatic or extrahepatic biliary
dilatation. The hepatic arteries, hepatic and portal veins are patent. The
gallbladder is normal. The adrenals, pancreas, and spleen are unremarkable
without evidence for focal lesion.

The kidneys enhance symmetrically. There is no pelvicaliectasis or
ureterectasis. There are no renal parenchymal lesions.

There are multiple loops of nondilated large and small bowel without
evidence for bowel obstruction or bowel wall thickening. There is no
abnormal mesenteric stranding. There is no mesenteric or retroperitoneal
lymphadenopathy. The urinary bladder is normal. There is no pelvic
lymphadenopathy.

There are no suspicious osseous lesions. There is a scoliotic curvature of
the thoracolumbar spine with degenerative changes.. There is a stable
sclerotic lesion in the left pubic ramus. There is a soft tissue density in
in the anterior left thigh measuring 2.5 x 1.4 cm, which is likely
postoperative (series 6, image 125).

Impression:
1. Hyperenhancing lesion within the dome of the right hepatic lobe, which
is indeterminant. Differential diagnosis includes both benign and malignant
pathology (benign: FNH, adenoma; malignant: metastatic melanoma). Further
is characterization with MRI is recommended.
2. Tiny right lower lobe pulmonary nodule.

 

We will be taking a print of this with us to ask questions as there are a couple of things mentioned that concern me that the doctors don't seem excited about.  I am going to do a little research into the medical terminology in the report this evening to try to put things in 'layman's terms' to try to understand better, and be able to ask intelligent questions. Hopefully the MRI will bring good news...

 

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DMU's picture
Replies 0

I had surgery on 10/15/2014. Have stitches across entire lower back, took about an hour or so.  Surgeon said as long as biopsy and all other tests come back fine I will be ok.

Pain is not as bad as I thought it would be. I keep going from hot to very cold. Tired

Hope all this information I have posted helps others who may be scared and have them be able to see hope for a long and healthy future.

:)

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JerryfromFauq's picture
Replies 1
Last reply 10/15/2014 - 9:13pm
Replies by: Happy_girl

My Wayne declared Victory over Melanoma through his faith in Jesus Christ at 7:46 am this morning ! He is with Jesus now .

 

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

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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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