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
Replies by: Jeff's Mom, jmmm

Wayne just got out of the hospital yestesday after 3 days  - after developing fever that got to almost 102 over last weekend.  It always started out ok in the morning and by night time it was getting higher....causing difficulty sleeping.

So we call MDA and they said it if gets over 100.4 and definitely over 100.8 to head to the ER again.   WHAT............what does this mean ?   We can't live at ER.    Every time it seemed that he had been outside, whether to just get in his HOT car at work to drive home or walk into the grocery, his fever would shoot up and keep getting higher at night.

Are any of you experiencing these problems with fever.    Said his liver enzyme was like 1 pt above what it should be and too much magnesium.

Lord, how are we going to do this.  I have pulled my back out that I worked YEARS TO GET HELP FOR AND FINALLY did......and now it's gone again from dragging luggage to the hospital.   I'm very debilitated with lupus and fibro and spent the day in bed.   We both need taking care of and I don't know how this is going to work.   How depressing.   

Any input would be appreciated if you understood anything I said.   I'm so tired after hospital I want to hang me, dang me.

Nancy (devoted wife of warrior Wayne)

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

Login or register to post replies.

joanic's picture
Replies 3
Last reply 5/14/2012 - 7:50am
Replies by: joanic, triciad, scots

I am currently 6-1/2 months into the Interferon injections (3 times a week) for Melanoma Stage 3b.     One of the many side effects which is driving me absolutely insane is the constant "belching".  Occurs at least 4-6 times per minute.  Feels much more like belching than acid reflux.    Have not found anything that relieves symptoms.   Either it doesn't help at all, or it's too strong and makes me nauseous.    Since I work, I try to "internalize" the belching while at work.   Driving my husband crazy because it's non-stop.   All in all - it's exhausting!   The only time I'm not belching is when I am sleeping!!   Wish I could sleep for the next 4-1/2 months!! :)

Very open to any suggestions from anyone else who has experienced this as well.   Most of the other side effects I am able to handle, but this one is wearing me down quickly!!   Thank you!!   

Login or register to post replies.

Anonymous's picture
Replies 5
Last reply 5/11/2012 - 4:44pm
Replies by: Janner, green8300, natasha, Anonymous

I have been reading about so many cases of misdiagnosis.  Are second opinions required for atypical too? 

Login or register to post replies.

bostonguy's picture
Replies 5
Last reply 10/14/2012 - 11:55am
Replies by: cojo869, Erinmay22, Lori1976, bostonguy, Anonymous

I am wondering if anyone has Crohn's disease in addition to melanoma?

 

Brief background on me:

 

1.5 mm melanoma on my left chest identified; sentinel node biopsy was positive in one node out of 5 with microscopic deposits (two foci - .27mm and .3mm) .  PET and CT and MRI all came back clean.  I'm scheduled for lymph node dissection on May 16th, next Wednesday. I'm praying that no more positive nodes are found!!

 

I have had Crohn's for about 18 years now; was diagnosed at 16 and am 34.  Since 2006/2007, my Crohn's has been kept in check by Humira, which is an anti-Tumor Necrosis Factor (aTNF)  biologic medication.  There's a lot of literature on the web about a link between aTNF drugs and melanoma, although every doctor (both Crohn's specialists and Melanoma Dermatology specialists) I've spoken to is skeptical. However, my oncological surgeon did tell me that it's possible that Humira could put me at higher risk for melanoma recurrence, which I obviously want to avoid.

 

After I have the lymph node dissection, I'll be meeting with a medical oncologist, probably to talk about Interferon.  I will also have to schedule an appointment with my Crohn's specialist and these two are going to have to figure something out.  I'm wondering what other people's experiences are.  As always, I appreciate any replies!

Login or register to post replies.

Hi everyone,

As I posted the other day, I had another massive diarrhea attack, this time w/fever, but as it was brought down w/Tylenol and Immodium (in addition to steroids), Dr. W. allowed me to wait to go the ER till after the graduation.

Long & short of it, they saw no perforation, and my bloods were good (not happy that I've lost 15 lbs...who the heck loses weight on Prednisone?  They definitely think that it's related to my previous gastric by-pass.  Yep, get a guinea pig again!  I'm now having diarrhea once/twice a day, and I take Immodium after.  They think that since immodium doesn't usually work w/Ipi induced colitis, that it's because of the by-pass. 

My daughter graduated w/an Associates in Dental Hygiene, a very rigorous program.  The young women (and a few men) usually go on to pursue their Bachelors while working as a hygienist.  One of the first speaker the top of the graduating BA's.  Her words were "Six years ago, I was getting ready for this ceremony and I thought it was the most important thing in my life.  Then I had a head and neck exam by my fellow student (they all work on each other) and was then diagnosed with Non-Hodgkins Lymphoma.  That early exam could have very well saved my life, and it certainly lead to a much earlier diagnosis, and treatment, as I was feeling fine."  Now this beautiful young woman is going into the public health field so she can help others.

Needless to say, as soon as she opened her mouth, I was sobbing in my seat, and my daughter was sobbing in hers.  Thankfully, I brought enough tissues.  This was a big lesson to me...I've been so consumed with Melanoma for the past 1.5 years, I've neglected going to the Gyn.  I will make that appointment.

Have a great weekend,

karen

Don't Stop Believing

Login or register to post replies.

jim Breitfeller's picture
Replies 2
Last reply 5/11/2012 - 11:18am

This is a great summary of immunotherapy as we know it today. It is somewhat technical but should be in the patient's, caregiver's and Oncologist's library. Knowledge is power. Power to heal ones disease.

Immunotherapy of cancer in 2012 

 

Best regards,

Jimmy B

Login or register to post replies.

webpatient's picture
Replies 6
Last reply 5/12/2012 - 10:03pm

Had melanoma surgery on my right shoulder in january 2012; level one; fully wide excised; negative lymph node biopsy; awaiting first observational meeting with dermatology/surgery team after operation; now scheduled for mid june

Yesterday felt a 'bump' above my left ear, that felt / looked (from best look i could get in mirror) like a pimple infected with hair follicle and irritated by cpap mask strap.

A scab formed over it, which I accidentally broke while touching it, and it is oozing a bit right now (no blood). It just seems like an inflamed pimple; cant see it well in mirror partially covered by hair.

Am i overreacting in asking to see dermatologist before mid june scheduled appt -- can another melanoma develop so quickly as it starts oozing?

It wasnt oozing yesterday, just felt like a 'bump'

Currently thinking of putting some antibiotic cream on it to see it heals. But, given the melanoma

Appreciate any thoughts

 

 

 

 

 

 

 

 

 

 

 

Login or register to post replies.

Snickers60's picture
Replies 2
Last reply 5/11/2012 - 6:16am
Replies by: aldakota22, BrianP

As some of you know Wayne has had a terrible trial on ZELBORAF.    HIGH FEVERS, SHIVERS, BLOOD RED FACE, NO SUN AT ALL, couldn't sleep for fever and chills.   Well, we call MDA on Monday and they told us if it hit 101 degrees again to head to ER, and so we did.   They did a lot of test, and everything came out clean.   They took him off it for the 2 days and he started it again this morning as we were leaving the hospital.   Fever seems to be good at this writing tonight.    Cultures came back good etc.

BUT THE REALLY BIG NEWS IS:    they did a CAT of his chest and lungs.    We were told he had METS to both lungs.   Right and left.  GUESS WHAT....there was NO MET IN THE RIGHT LUNG evident on that CAT SCAN in the right lung.    AMEN !!!!!!!!!!!   We are praying this was just a FALSE POSITIVE from the PET !   Oh what wonderful news that is and would be if it holds true.

Even on x-ray - one on the left lung, but NONE on the right !     I'm taking that in BLIND FAITH.   Doc said even the right lung tumor was very small...early on on the game.

The Doc here wanted to cut his meds in half and the big guy at MDA (D'BOSS) said NO !   Full steam ahead with a full dose.   On the scan you could see where the tumor in the left lung had already shrunk in the CAT BEFORE AND AFTER PICS in only 2 short weeks.  

We're encouraged though it's been a very, very hard week.   Remember I am disabled with Lupus and Fibro and a hundred other things and Wayne is my caretaker.   Don't know exactly how this is going to work, but I know the one who does.   MY LORD JESUS and we TRUST HIM !

Hope you guys have had GOOD DAYS and BETTER HEALTH !

Nancy (devoted wife of Warrior Wayne)

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

Login or register to post replies.

H555's picture
Replies 2
Last reply 5/10/2012 - 9:39pm
Replies by: washoegal, Jeff's Mom

today was my first oncology consultation after starting Zelboraf on April 9th. it was very good, the doc described me as a strong responder, my lungs are markedly improved and no reason to postpone a trip in July to visit our son in the Peace Corps in Kenya. I feel so lucky that this drug is available to us, that I have access to it, that there's this board where others share experience, strength and hope. I'm a grandpa of 2 little ones and my greatest hope is to go long enough to see my 28 daughter as a mom. that's a year or two away.When I started Zelboraf I couldn't walk the dogs a mile, take in enough breath to blow my nose nor talk for very long. hard to believe that was only a month ago. So far Z is a miracle drug for me. Plan B if needed is Yervoy.

 

My profile info is updated. this cancer was a secondary from 1995 that came out of the blue in May/June 2011.

Login or register to post replies.

Replies by: washoegal, Janner

I was scheduled for a ultrasound guided fine needle aspiration (biopsy) today and was told that i couldnt take any asprin, aleve, advil, excedrin, etc... as these are all blood thinners. My first question is why does this matter? and second is what do i do for my headaches? i didnt realize when i was at the doctors that all of these things were considered blood thinners and didnt get to ask what i could take for a headache. since i have a splitting one now, im hoping someone will know the answer to this. 

 

thanks!!

 

dj

Login or register to post replies.

laurieformike's picture
Replies 21
Last reply 5/17/2012 - 12:02pm

It has taken me many weeks to be able to post on the board.

He was going to have more radition on March 7th, but before the went to do Cyber Knife Surgery they wanted to do another MRI. After the MRI they enformed us that he was much worse that the week before, so they felt it would only make him even more worse. So instead he left the hospital to come home for the end of life. Although there was a slight possibility that the Zelboraf would still work, it was hard to realize that it wasn't helping the brain, because it had helped so much in the liver, lung,and limp nodes!

RIP Cigar Mike 4-3-2012. He made it to his 55 Birthday, 3-25-1957. LOVE YOU FOREVER,

Login or register to post replies.

Anonymous's picture
Replies 1
Last reply 5/11/2012 - 9:57am
Replies by: NYKaren
Eileen L's picture
Replies 5
Last reply 5/11/2012 - 7:08pm

I am so ecstatic! Just got off the phone with the trial coordinator. I will be starting the Genentech Braf/MEK trial on Thursday of next week. It has been a crazy three months for me but I feel I am finally on the right path. Thx to everyone on this board for your encouragement and suggestions. I am looking forward to getting started and shrinking that pesky adrenal gland tumor!

Eileen L

Login or register to post replies.

AnnaBanana30's picture
Replies 10
Last reply 6/4/2015 - 1:57pm
Replies by: CWeclaw, Anonymous, AllyNTAus, AngelaM, teri0915, natasha, bdhf

Has anyone developed melanoma while pregnant or shortly after?

I just think it's intresting that two moles on my body changed while I was pregnant with my son and turns out they were both melanoma in situ. I just wonder if there's a link since your body chemistry changes so much while your pregnant.

Login or register to post replies.

CherylL's picture
Replies 4
Last reply 5/10/2012 - 7:06pm
Replies by: Phil S, CherylL, susanr

Hey Friends---

Have been very derelict in visiting the board, but just wanted to jump and and share that my husband Scott, now freshly Stage IV, has just had bag #5 of high-dose IL-2 administered here at UVA under the amazing guidance of Dr. Grosh. 

While his side effects are palpable (intense flu-like malaise, violent rigors/shivers, blood pressure drops, bloating, etc.) at this point, the timings are predictable, and the incredible crew here (amazing nurses, think EVERY week should be Nurse Appreciation Week!) are making this as pleasant an experience as possible. :)

We are highly optimistic my man will be one of the "total, durable, life-long responders!" 

Along with my husband's unflagging sense of humor, we are finding a valuable supplement to the traditional medical intervention is the shared success stories of others.

If you are---or know of--- a long-term Stage IV survivor following IL-2 treatment, would you take a moment and share your good news so I can relay to my husband (and our now 10-year-old twins---they were 4 at Daddy's original diagnosis)?

We do know stats and don't for a single minute live our lives or predict our family's outcome based upon them, so if you don't mind, please keep things positive!  :)

Many thanks, and KEEP FIGHTING, Friends!
 

Cheryl
Wife of Melanoma Masher, Scott, now Stage IV, with small "incompetent" mets in lungs

*Diagnosed Stage IIa in October 2005 (WLE/SNB - no nodes), Stage IIIc in October 2009 (radical neck dissection, multiple affected nodes), January 2010, supraclavical recurrence and resection, still Stage IIIc. June 2010, targeted radiation. August 2010, Clinical trial at NCI/NIH under Steven Rosenberg. March 2012, surgical biopsy at NIH reveals long-observed and stable nodes in lungs "changing" and verified melanoma. Stage IV, and ready to pull out the big guns! 

 

 

 

 

 

 
 

Login or register to post replies.

Pages