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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DeniseK's picture
Replies 6
Last reply 11/4/2012 - 11:35pm

Hello everyone.  Just wanted to update my situation.  Last year went through hell with melanoma and went through only 2-1/2 weeks of interferon due to high risk recurrence.  About 2 months ago I noticed a BB sized bump under my skin on my forearm.  It is now the size of a good marble.  I've been kind of driving myself crazy wondering and not being able to see a doctor due to no medical insurance.  I moved back to California and applied for assistance.  I was initially denied because my unemployment was over the income limit by $130!!  Since it was close I asked for a fair hearing due to medical need.   I got a call this week and was told they approved me for 2 months of assistance.  I only pay $12 per office/hospital visit.  I was referred to my surgeon who took care of me last year and have an appointment for a biospy next Friday!!  Yayyy!!  He will most likely order a pet scan as well so I'll know where I stand instead of driving myself crazy with all the "what if's!!"  I have only had one pet scan after my surgery since I haven't had medical insurance so this will be a doozy waiting for results!! 

Question about under the skin biopsy.....When I stopped by my surgeons office they told me they may have to do an ultrasound and call in an orthopedic surgeon.  I thought they just did a needle biopsy.  Also how do they treat a sub q tumor if it comes back melanoma?  Do they do a wide excision again?  I have also been told this is stage IV since it's under the skin (if it is Melanoma).  What happens if it comes back as a sub q tumor and I go to stage IV will I have to do chemo or radiation?  I don't want to over react but I want to be prepared.  Thanks for your help!!  :) 

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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mama1960's picture
Replies 3
Last reply 11/4/2012 - 11:26pm

I had the node dissection in right groin Oct. 1. Superficial and deep. 28 nodes taken and only one positive. Good news! Still have two drain tubes. The drainage started to taper off, then I went back to work this past Monday. Went way back up. The doc at MD Anderson said to scan and watch and did not recommend any additional treatment. Seeing local oncologist 11-14. For me, this has been a tough surgery and recovery, but the worst is behind me, I hope.

It is what it is.

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Moodypoodle's picture
Replies 11
Last reply 11/4/2012 - 6:37pm

In February I had a mid-foot amputation when the non-healing wound on my foot turned out to be Acral Lentiginous Melanoma.  Afterward I declined the interferon treatment due to the iffy results and certain diminished quality of life.  I am 71 y/o and QOL is a priority.  Quality of life was already compromised by the half foot thing.  I kept thinking things would get better; after all, amputation is pretty radical.  Six months or so after the surgery I started developing these little plastic-like pimply things on the amputation scar.  Plus some little red dots started showing up around the area.  My primary care physician sent me to a dermatologist at UAB who was not particularly concerned at all.  That same week I had a routine appointment with my oncologist who promptly sent me to the Wound Center for biopsy and scheduled me for immediate PET/CT.  Did I mention I also had egg sized lump in groin?  I’m sorry I still don’t have all the jargon down in spite of reading this site daily.  Anyway, it was the Wound Center doc who dropped the bomb: the melanoma was back and this time there were mets in lungs, liver and abdomen.  Oncologist confirmed diagnosis.  Both suggested I should look at getting my affairs in order.  My husband was/is a basket case.  I’m opting to do YERVOY and had my first infusion Monday.  It’s Friday now and so far so good.  This is definitely the short version of what is going on.  I just want (need?) to connect with others in the same boat.  Oh yes, those little plastic bumps?  They are now full-fledged lesions and the little red dots are spreading up the front of my leg.  A little ray of sunshine in all the gloom and doom, my brain MRI came back clear.  I was in the middle of Walmart when onc called to give me the good news!!  My biggest fears are pain and losing my ability to think clearly.

Every Second Counts!

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casagrayson's picture
Replies 2
Last reply 11/3/2012 - 11:09pm
Replies by: casagrayson, Janner

My husband has had two primary melanomas removed.  I noticed an oddly pigmented area on his jawline that the dermatologist almost didn't biopsy; it was a shallow melanoma that was removed in 2002.  This spring I noticed another flat, pigmented area on his scalp; it also was a shallow melanoma.  Neither one of these were deemed to be serious nor was he referred to an oncologist.  Last week he went back to the dermatologist because he had developed a nodule underneath the skin on his arm; it had been growing for over a month.  A biopsy was done, and it came back as inconclusive.  The specimen was sent off to a Univeristy for further evaluation, and those results came back as "recurrent basal cell carcinoma".  I should be jumping up and down with joy, but I'm concerned because he has never had a basal cell carcinoma in that location!  Is there any possibility that this could actually be a melanoma metastasis?  He is scheduled for a Mohs procedure next week.  Should we push for the "slow Mohs" given his melanoma history?  

Thanks for any direction you can provide.

Strength and Courage,

Susan

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Angela C's picture
Replies 7
Last reply 11/3/2012 - 9:52pm

Hello.

I got back Tuesday from a follow up visit at NIH. I did the IL-12 TIL trial in April and have been on monthly scans and follow ups. Last month I had a new brain met. I had SRS at the beginning of October. Unfortunately, my adrenal gland tumor continues to grow and now I have a new spot behind the pancreas as well. I'm now officially a non-responder to the TIL trial. So, now it's time to find something new.

I'm checking into a MEK trial. I'm wild type BRAF, though, so I'm trying to find one that doesn't require the mutation. I'm also considering an Ippi reinduction. The doc at NIH said my immune system is different now, so I could have s better response to it the second time around.

I was hoping to do surgery and take the adrenal tumor out since I'm now having a fair amount of pain from it. But, it's pretty much inoperable at this point.

So, it's back to limbo land now waiting to hear from docs and trying to make a decision on the next step. I hate this part. There's so much anxiety knowing the current treatment isn't working and trying to find the next step.

Do any of you have experience with a MEK trial for people without the BRAF mutation?

~Angela

Be kind, for everyone is fighting a great battle. -Plato

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Colleen66's picture
Replies 13
Last reply 11/3/2012 - 5:22pm

Hi all.  Basically, I had a growth that started last winter.  In June I wanted it removed for cosmetic purposes.  Turned out it was melanoma.   I've had the wide excision surgery and sentinel node removal.  The cancer in my leg is now clear but the node had cancer.  It is stage 3a.  Now comes the choices of treatment.  

1.  Do nothing.

2. Do the lymph node removal in the left groin.

3. Do the interferon treatment. 

4. Combination of 2 and 3.

5. Go into a trial. 20% chance for the surgery, 80% chance in the no surgery group.  The no surgery group gets ultrasounds.  Both groups may choose the interferon treatment if they choose.  

I am uncomfortable knowing that the cancer is still in me.  My family all have their own opinions but I am really scared and having difficulty weighing the risks vs. Reward.

I am 47 of Irish ancestry.  Fair skin, freckles, blue eyes.  The Doc told me I am now high risk for recurrence.  My oncologist is also the head of this trial.  She is of the opinion that I should do the trial, bias?  I don't know.  My immune system is already compromised as I have hypothyroidism,  celiac disease and sjogrens.  I am also bi-polar, severe depression, anxiety disorder and a few more acronyms.   My psych issues have been stable except for the anxiety, for obvious reasons.  

Do you guys have any insight for me? Anything at all will be helpful.

Colleen 

Live!

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CarolA's picture
Replies 3
Last reply 11/3/2012 - 2:37pm

Through the seven+ years I've been coming to this forum, I retained information that post WLE and SNB, there was a window of 57 (?) days to choose to do interferon.   Where the heck did I come up with this?   I tried looking for this fact, and I can't find it.   Is there factual basis for this?   I know there was a good post that EmilyandMike put up (10/12/12) with different physicians opinions on Interferon.   I know there is great debate on interferon usage/success.   But what I'd like to have cleared up for future warriors is this time frame business.   I don't want to spread inaccurate information (which I sort of did in another post, which is prompting this one).

CarolA 

CarolA

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Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Jocks wife's picture
Replies 1
Last reply 11/3/2012 - 1:45am
Replies by: DeniseK

I'm new to this website, and my treatment has been different to most, so far so good, so I wanted to get it out there.

I am 46 yr old female from Christchurch (New Zealand). In 2006 I had a melanoma removed from back (1.7mm). Had no probelems for 5 1/2 years when I discovered a lump on my side, turned out I had 3 subcut. tumours an adrenal tumour and a tumour on the tail of my pancreas. I went into meltdown but managed to read everything I could about melanoma. The common theme I could see was that complete surgical resection seemed to be the best chance of changing the course of this dreadful cancer. I insisted on surgery (it took some doing). When my oncologist agreed, the adrenal tumour had grown very large and very close to my aorta. I then went on Z for just 7 weeks (not yet funded in NZ so very expensive) I had dramatic reduction in all tumours and my surgeon (Connor Saxon, my hero) agreed to remove tumours. I have had an all clear 3 month scan, and am about to get my results from 6 month tests (very anxious time), but I feel completely fine and don't let melanoma dent my hapiness too much at the mo. I have decided to keep as aggressive as I can. My thinking is that if need surgery again (if viable) I will be able to go back on Z and it should give me similar results, as my first tumours didn't have time to develop resistance. My Surgeon and Oncologist think this may be a succesful way of treating stage 4 and are currently writing up my case. I hope this helps some one....please remember it is now thought that complete resection of tumours is the vital part of surgery, the number of tumours removed is insignificant, in fact in recent studies I have read people with more tumours removed do better - who knows, maybe their immune system gets such a boost from having no tumours to fight, it goes into overdrive! 

Hope is a much more powerful emotion than fear.

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Ali's picture
Replies 28
Last reply 11/2/2012 - 3:39pm

Background: radiation and IL-2 in January.  Finished end of May.  End of June found 25 brain mets, and cancer all over the body.  One dose of IPI, began Temodar same day.  12 week post IPI scans came back today:

The nurse practitioner came into the room with the biggest smile on her face.  "Good news?"  I ask, as my smile starts matching hers.  "Yes, just read it."  She handed me the print out from the radiologist.

MRI Brain wwo Cont

"Just skip to the end."

IMPRESSION:

Interval near complete resolution of enhancement associated with multiple metastatic lesions.  Very faint residual enhancement associated with a right frontal parafalcine mass.  No new enhancing lesions, acute ischemia, or hemorrhagic metastases.

Me (kind of tearing up): "So this is uncommon, yes?" 

Her: "This like...never happens." 

She hands me the other report.

PET CT Whole Body

Again I skip the bottom.

Impression:
1.  Marked interval improvement suggesting treatement response having demonstrated between 50 and 100 hypermetabolic lesions on prior imaging, now demonstrating 4 hypermetabolic lesions.  Lesions include a right adrenal nodule, nodule superior to the right kidney, anterior mediastinal nodule, and right axillary node.
2.  Increased activity withing the right maxilla consistent with periodotal disease.  
3.  Multiple small metastatic lesions demonstrated on the prior MR of the brain are too small to characterize by PET.

You read that right.  4 tumors left.  None of them in the brain.

ARE YOU KIDDING ME???  I am still in shock.  I know I still have cancer, but lots less, and nothing new.  Such a good day for my little family!  Had to share!

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rrrule32's picture
Replies 10
Last reply 11/2/2012 - 12:03pm

Hello All,

My fiance, Kaitlyn, has been on Zelboraf since July 20.  Well, last week we started noticing some new growths in various different areas.  Not only that, but they seem to be growing fast. 

Now we're trying to figure out what's next for her?  Are there really any other decent options?  She's been on IL-2 and Ipi.  She also has 5 brain mets that were stable as of September 20, but who knows anymore now that she is progressing again. 

Has anyone tried the combo of Temodar + Ipilimumab?  I'd like to do that one because Temodar gives fast relief, and Ipi can build the immune system up.  When she was on Ipi, it actually did start working, but because of complications with her brain mets, she had to be taken off of it.

Any advice would be greatly appreciated.

Thank you,

Travis

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amandamini's picture
Replies 7
Last reply 11/2/2012 - 10:47am

Hi all,

 

I was diagnosed in Oct. with stage 2 clarks level 4.  I had my SNB and WLE and all was clear!  That was great news.  My plastic surgeon then referred me to an oncologist to get a PET scan.  Today I met with the oncologist and was surprised to find out that he recommended me going on Interferon for a year.  What can I expect as far as side effects?  Please let me know your experiences with this drug. 

 

Thanks for your help with this!

Amanda

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awillett1991's picture
Replies 5
Last reply 11/2/2012 - 10:02am

Just finished 2nd dose of Ipi and diagnosed today with 2 brain mets - 4 mm and 6 mm. Bummer since only been off Zel 4 wks and was told brain was all clear. Anyone have experience with doing radiation in between Ipi treatments? I think there were some trials based on some effects they had seen at Sloan where radiation seemed to have turbo charged Yervoy and it then attacked the melanoma all over the body like crazy. Looking at SRS to zap these 2 critters as soon as possible.

Thanks.

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Anonymous's picture
Anonymous
Replies 2
Last reply 11/2/2012 - 12:18am
Replies by: doriniel, POW

So just had my 6 month ct i have been off and on zelboraf for 15 months. I now have a subcutaneous tumor that has grown in size. I have only been taking zelboraf half strength due to side affects and only one week one and one week off. So here is my dilemma do i increase the dose and take it steady and suffer through the side effects (terrible feet and joint been, low energy, nausea) and give the zelboraf another go? Or do I switch to yervoy. or do I join a new clinical trail ( if any are available) any ideas. all other tumors are gone or are littler than previous only have the one that tripled in size.

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Caretaker's picture
Replies 18
Last reply 11/1/2012 - 4:58pm

Hi,

Been reading for a while; this is my first post. I'm caretaker for the most wonderful man in the world, diagnosed stage IV & metastisized all over his body at the end of June, including a tumor on each of his frontal lobes. He had a heart attack 3 weeks later, which postponed the start of Z until the end of July, app. 3 months at this point.

At first, Z was working like gang busters, and 2-month MRI, cat scan, and pet scan showed progress. His energy level was up,and he even gained a couple of pounds.

A couple of weeks ago his energy level began dropping slowly. Within the past week, he began behaving/thinking/not remembering as one who has Alzheimer's. His oncologist put him in the hospital Friday (when she came back from her vacation). His heart meds need recalibrating as his bp and pulse were too low, and another brain mri was taken. Today we found out he has "multiple new lesions" on the brain. We don't know how many, and this oncologist doesn't do hospital visits. (I know. I wish we'd known that when we started but we're pretty new in town.) He's losing weight again (app. 45 pounds total so far), no energy, and gets emotionally upset easily and constantly.

I'd like to know if any of you have had Z work for 3 months and then quit?

If this was you, would you try a different chemo? Would you try an alternative and, if so, which - Gerson's, baking soda and maple syrup, high dose Vitamin C, other??

And also, if this happened to you and Z kicked back in, please let me know that, too!

Thank you for reading, all, and please keep sharing your wonderful stories!

Peace,

Caretaker

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