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
swissfarm7's picture
Replies 2
Last reply 11/6/2012 - 10:51pm
Replies by: POW, Mandi0280

Thought I'd share an update since I really appreciate reading present and past feedback on various treatments.  My husband (stage 3B) is on his fourth and final week of high-dose interferon.   I mentioned here at the start that his side effects have been fairly manageable.  Based on all I read, I was prepared for him to be nearly out of commission.  In reality he does work each day ~ and as a dairy farmer, it's not a desk job. ;-)  

Mondays ~ the first day of treatment each week ~ have been the most difficult.  He's had a couple of instances in which he was extremely nauseated and gripped with a severe headache.  Generally, though, his side effects are on par with a low-grade flu.  He previously functioned just fine on six hours of sleep each night.  Now, he's typically in bed by 8 pm, sleeps 10-11 hours, and naps for an hour or two in the afternoon.  He's fatigued, has lost 10 pounds, and is what I'd describe as listless.  Not depressed per se, but just not himself.  Maybe those of you who have experienced the treatment ~ either directly or indirectly, as a caretaker ~ know what I mean.

His ANC (Absolute Neutrophil Count) numbers (white blood cells) have been decreasing, which is to be expected.  But today it was low enough to require a dosage reduction, so he'll finish out this last week at half of what he has been receiving.  Then he'll move on to sub-q injections three times per week.

Despite persistent "encouragement" on my part, our insurance will not pay *anything* toward the injection doses.  Paying for a drug to be administered intravaneously but not paying for it to be self-administered sub-cutaneously.  Where's the logic?!  Through the clinic, we were able to register for the ACT Patient Assistance program.  It was strangely quick and easy to be accepted into this program, and the interferon will be sent directly to our home.  Something about the whole thing doesn't feel quite right, like there are strings attached that I don't know about yet or something.  I don't know if it's a big tax write-off for Merck or what?   Anyway, at this point, it's all we've got.

One thing I'm realizing, as he receives care now at our local hospital, is how exemplary was the attention we received at Seattle Cancer Care Alliance and University of Washington Medicine.  That's where we went to immediately his diagnosis, where he received his surgeries and was under the care of surgical and medical oncologists whose specialty is melanoma.  I absolutely felt we were in the best hands possible, people who are experts in this field and whose knowledge I could trust.  Our home hospital is very, very good, but the reality is the oncoloists there don't typically deal with melanoma.  They're good people, well-educated and well-trained, but they ~ and the staff at the infusion oncology clinic ~ are far more familiar with other cancers.  I therefore feel a lot less comfortable and a lot more weary, always wondering if they really know what's best. 

Anyway.  I'm rambling, I suppose because this is my outlet to talk to people who really know about this disease.  I'm always reading here, cheering for all of you. 

Warmly,

Colleen

Keep on keeping on.

Login or register to post replies.

Souxie_q's picture
Replies 8
Last reply 11/6/2012 - 5:06pm

Well everyone I posted on the 17th of October about my sister, she passed away on October 22. Unfortunately her cancer was too aggressive and she was never able to start zelboraf.
Almost 2 weeks out I still can't believe she's gone. I was with her when she died, told her how much she was loved. I'm writing here because the Zelboraf showed up too late for her to use but I have 2 bottles of this. The drug company won't take them back and her oncologist's office said they would try to get them back to the drug company, but I'd rather someone else use them....
Is anyone here in need of it?

Login or register to post replies.

Richard_K's picture
Replies 10
Last reply 11/6/2012 - 2:22pm

 

The good news - Yesterday I got the results from my last scans.  Everything is stable, no change, and I’m thrilled to have completed 32 months on Zelboraf.

The not so good news - For the second time in a row, my bilirubin is high and I am on another one week holiday.  Assuming the bilirubin returns to normal with a retest next week I will restart Zelboraf but probably at 720mg twice per day.

I’m looking forward to breaking that 3 year mark and I hope bilirubin cooperates.

Dick

Login or register to post replies.

NaturalNews Insider Alert ( www.NaturalNews.com ) - please forward

 

Dear NaturalNews readers,

An amazing cancer summit begins tomorrow, featuring mind-blowing interviews with top cancer experts who are laying out the truth about cancer treatment, cancer solutions, cancer prevention and things the cancer industry doesn't want you to know!

It has been organized by my Kevin Gianni, and it features an amazing lineup of alternative cancer experts:

* Kris Carr - Cancer Advocate and Survivor

* Dr. Nicholas Gonzalez - Integrative Cancer M.D.

* Dr. Leigh Erin Connealy - Integrative Cancer M.D.

* Dr. Francisco Contreras - Integrative cancer M.D.

* Nicholas Ortner - Emotional Healing Techniques

* Dr. Keith Scott-Mumby

* Mike Adams - The Health Ranger

* Cancer Survivor: Christopher Wark

* Howard Strauss - Advocate & Son of Charlotte Gerson

* Jessica Ainscough

 

Registration is FREE!

See the announcement at:
www.naturalnews.com/037859_cancer_solutions_summit_event.html

 

Or register now at:
www.naturalnews.com/Healing-Cancer-World-Summit.html

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

Login or register to post replies.

yoopergirl's picture
Replies 3
Last reply 11/6/2012 - 9:32am
Replies by: Greenbug, Anonymous, NYKaren

I woke  andup the other night with itching and BUGS, mind you we have NO young children at home or grandkids/ I used the shampoo and comb, no clue where they came from.         I finally got my wheelchair so am gettting around a lot better. my legs juat give out on me. Hubby had to take all the heavy bedding to wash, he will .be gone all day today so hope I do okay with not help  .

Login or register to post replies.

Richard_K's picture
Replies 11
Last reply 11/5/2012 - 3:26pm
Replies by: Richard_K, fdess056, Anonymous, wolkies, aldakota22, NYKaren

 

Has anyone heard how Dr. Pavlick or anyone on her staff got through Sandy?  Hoping they and their families are all ok.

Also, does anyone know what is going on in lower Manhattan? Is there a status of when the Cancer Institute will reopen?

Hard to believe the havoc Sandy brought to the area.

Dick

Login or register to post replies.

thrashter's picture
Replies 10
Last reply 11/5/2012 - 1:11pm

After this surgery going to Oncolist and starting biochemo therapy. I read it is tough but doable. Having done at Kaiser. Would like to get a gage as to how tough it will be. Thanks

Login or register to post replies.

DeniseK's picture
Replies 16
Last reply 11/5/2012 - 8:09am

Hey all!

Well I got the biopsy results back yesterday from the subcutaneous tumor that was growing on my arm.....Sure enough it's melanoma.  URG!!!  Surgery next week after Pet scan on Wednesday to make sure it hasn't spread anywhere else. (fingers crossed)  They said I was high risk to recur and sure enough I did!  It was just over a year.  So now I guess I'm going back to the Melanoma Center in San Francisco to determine what kind of treatment to do.

It was so hard telling my kids last night and it's scary to think about the future.  I guess if I was going to recur my arm would be the best case scenario vs any organs.  My doctor said that I will likely have these nodules pop up here and there.  The tumor started out the size of a BB when I noticed it and grew to the size of a marble/grape in about 2 months.  I have another one that is the size of a BB just below my belly button that we are going to remove and test too.  That one wasn't biopsied since it was so small but we're going to take it out just in case. 

I know a lot of you have been fighting and it amazes me the strength and courage you all have.  I am in this to fight as well and any input to what kind of treatments have worked or are working would really help me.  Someone told me about a Doctor in Germany that can cure melanoma.  Has anyone heard of this?  What about diet change or any other things I can do?  I refuse to go down without a fight!! 

Also I'm on unemployment right now and have temporary insurance until December 18th.  Could I get social security/disability?  How do I go about getting that so I would have insurance?

Denise

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

Login or register to post replies.

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.

Login or register to post replies.

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.

Login or register to post replies.

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!

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

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!

Login or register to post replies.

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

Login or register to post replies.

Pages