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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Doug-Pepper's picture
Replies 1
Last reply 11/18/2011 - 6:43am
Replies by: MariaH

Praise the Lord! Doug had an appointment @ CCI(Clearview Cancer Center) last week. Lymph nodes, blood work, & skin all looked good. He had a clear pet scan in Aug. & will have another one in march. I am so proud of how he has been taking better care of himself. Since diagnosis we have changed our diets, added supplements, & alkaline water. I also noticed that his skin has been much softer after we put a filter on his shower head. I figure it can only help, tap water is not always the cleanest. Anyone have any thoughts on having pet scans every six months? Praying for all who are affected by this horrible disease. Thanks for all of the support, Pepper.

"God is our refuge & strength, an ever-present help in trouble." Psalm 46:1

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Lisa13's picture
Replies 3
Last reply 11/18/2011 - 2:23pm
Replies by: kylez, momof2kids, Angela C

2 days ago was my gamma knife on 2 brain tumours.  Although the procedure was 1 hour and 20 minutes, I got through it okay with lots of anxiety meds!

Anyway, I've never had symptoms from the one brain met which was about 2.5 cm - the other 7mm.  The radiologist even said this was definately abonormal not to have symptoms, but it's a remarkable thing. Anyway, today, I have some slight pain around the area where my tumour would be and around the spots where the screws were. Would this slight pain be normal in the area of the tumour?  Maybe it's doing something right now that it wasn't doing lately, so it feels kind of strange.  I don't need pain killers so I'm okay - it's just a weird quick pain.  Anybody experience pain or sensations after gamma knife??  The pain comes on the top of my head, but my main tumour is deep down in the brain, so maybe it's pain from the radiation, plus screw holes in my head.

Any ideas, support, etc??

Lisa

Many impossible things have been accomplished for those who refuse to quit

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Wetterhorn's picture
Replies 3
Last reply 11/18/2011 - 4:50pm

Hi all,

Been a little while since I have posted, just thought I would give a quick update. I started Yervoy in July for a small liver met, about 5mm. I got through 3 treatments before experiencing severe headaches and low energy. Brain and Pituitary MRIs showed no evidence of disease, but docs thought the yervoy caused my system to attack pituitary and thyroid, so I was put on prednisone and thyroid medication. Turns out, thyroid levels and adrenal levels came back to normal after I stopped taking medication and I felt fine for a few weeks. 

Then, about a month ago, I began to feel quite nauseous almost on a daily basis. Some days worse than others. I called docs at Sloan and they didn't seem too concerned. It continues to linger however.

Has anyone else experienced fairly severe nausea after Yervoy? Just wondering if I should more concerned.

My lesion did not grow at all since it was originally detected, so at least that was good.

Thanks

Wetterhorn

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Hi Tam,

Was wondering how your husband is doing on the braf/mek trial at UCLA.

Wishing you the BEST!

Carol

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joy_'s picture
Replies 10
Last reply 11/19/2011 - 9:59am
Replies by: joy_, DonW, Anonymous, LynnLuc, lhaley, Janner, bradcope1

Hi everyone.  My husband and I have had BCBS (self-pay) insurance for years.  He was orginally diagnosed with melanoma in 2007 with a recurrance in 2010 and is currently NED.  BCBS has now priced us out.  We cannot afford the $1200/month payment any longer.  I have been told by various people that if we lose our current coverage, we will not be able to get future coverage or that no other insurance company will take us with his previous melanoma diagnosis.  Does anyone know if this is infact true or if we have any other options at all.

Thanks in advance for any insight or advice.

All the best,

Tracy

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TracyLee's picture
Replies 12
Last reply 11/24/2011 - 6:13pm

Hi y'all,

After 3 months, I'm failing BRAF. Lung refilled and had to be drained this past Monday, terrible arthritis in my right wrist kept me awake Sunday into Monday.

Dr. Peri is coordinating with Dr. Sharfman at Johns Hopkins. They are going to have me change my dose: high a.m., lower p.m. + low dose steroids for the pain in the joints.

I go back on 12/1 (if not sooner if lung re-fills, it could happen). Will have more info and another "plan" to move on, and get this damn melanoma out of my life.

 

I'm normally upbeat, but just feel totally flattened right now. There are so many who are in so much worse shape (I'm still working full time, and feel pretty good, actually), but today is my pity party.

 

TracyLee Stage IV

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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Good Day fellow warriors!

It's been a long time since I've posted here since I thought I wasn't going to need to again.  However, I've updated my profile with all the happenings of the past year, so if you'd like a complete update, please check that out.

Summary...I hat spots on my lungs this past April, which they scanned 3 months later and they had grown to 7mm and 12mm.  Biopsy confirmed melanoma, so Dr. Chmielowski of UCLA started me on the Yervoy treatment.  I was able to complete 3 of the 4 injections before I came down with severe colitis which landed me in the hospital from 8-11 Nov (got discharged Veteran's Day of all things).  They started me on 100mg of Prednisone which I'm not happy about, but it's made the colitis much better for now.  I've started tappering 10mg a week and I'm at 90mg now.  Needless to say, I'm not finishing the Yervoy treatment.

PET/CT scan the other day showed that the spots in my lungs have grown to 9mm and 22mm, but there are no other remarkable locations of melanoma, so at least it's not spreading to anywhere else yet.  The next steps we came up with are to remove the nodes via surgery and test them for the BRAF mutation.  If positive, I'll go on BRAF inhibitor drug post-surgery and see how things go.  I'm running this plan by my docs at MD Anderson too, just to make sure they wouldn't do anything different.

All-in-all I actually feel good, I'm eating, not quite exercising yet, but walking when I can, got good meds to help me sleep, and I'm not symptomatic from the cancer at all.

So, any comments or suggestions out there from folks on other trials that may be also promising for someone like me?  Also, we're wondering if there may even be a delayed response from the Yervoy and maybe it'll go to work later.  I'm not very hopeful about this since they have me on such high dose steroids and my immune system is just getting shot to pieces from that.

Also, I just want to say to everyone on here...keep fighting this hard, not only for yourself, but for those you love and who love you.  It's the fight in us that makes us strong, and through our strength we will have victory.  Peace.

2010 Stage IIIC - Lymph node dissection; Interferon 2011 Stage IV lung mets; Yervoy 3/4 only; surgery & BRAF next Through faith & prayer we will be provided with peace & healing.

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CaptAaron's picture
Replies 14
Last reply 11/20/2011 - 5:16pm

Good Day fellow warriors!

It's been a long time since I've posted here since I thought I wasn't going to need to again.  However, I've updated my profile with all the happenings of the past year, so if you'd like a complete update, please check that out.

Summary...I hat spots on my lungs this past April, which they scanned 3 months later and they had grown to 7mm and 12mm.  Biopsy confirmed melanoma, so Dr. Chmielowski of UCLA started me on the Yervoy treatment.  I was able to complete 3 of the 4 injections before I came down with severe colitis which landed me in the hospital from 8-11 Nov (got discharged Veteran's Day of all things).  They started me on 100mg of Prednisone which I'm not happy about, but it's made the colitis much better for now.  I've started tappering 10mg a week and I'm at 90mg now.  Needless to say, I'm not finishing the Yervoy treatment.

PET/CT scan the other day showed that the spots in my lungs have grown to 9mm and 22mm, but there are no other remarkable locations of melanoma, so at least it's not spreading to anywhere else yet.  The next steps we came up with are to remove the nodes via surgery and test them for the BRAF mutation.  If positive, I'll go on BRAF inhibitor drug post-surgery and see how things go.  I'm running this plan by my docs at MD Anderson too, just to make sure they wouldn't do anything different.

All-in-all I actually feel good, I'm eating, not quite exercising yet, but walking when I can, got good meds to help me sleep, and I'm not symptomatic from the cancer at all.

So, any comments or suggestions out there from folks on other trials that may be also promising for someone like me?  Also, we're wondering if there may even be a delayed response from the Yervoy and maybe it'll go to work later.  I'm not very hopeful about this since they have me on such high dose steroids and my immune system is just getting shot to pieces from that.

Also, I just want to say to everyone on here...keep fighting this hard, not only for yourself, but for those you love and who love you.  It's the fight in us that makes us strong, and through our strength we will have victory.  Peace.

2010 Stage IIIC - Lymph node dissection; Interferon 2011 Stage IV lung mets; Yervoy 3/4 only; surgery & BRAF next Through faith & prayer we will be provided with peace & healing.

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LEEPOINTON's picture
Replies 2
Last reply 11/17/2011 - 4:01pm
Replies by: SarahS, Fen

I was diagnosed last year with Melanoma on my back. I had a wide local excision and all was fine. I went for check ups every 3 months. On the day of my 12th month check my consultant discovered a lump under my left arm. After a biopsy, yes it was back. I was diagnosed with metastatic malignant melanoma stage 3b. I had a full lymph nose disection 8 weeks ago and am now suffering with lymphodeama. I have read numerous sites, mostly giving bad vibes and bad prognosis of suffers of this type of cancer. I was wondering if there is actually any good news stories from people that have had this and years down the line have seen no reacurrance. I am only 40 years old and feel that already i am a sitting duck waiting for it to come back and there be nothing more to be done. Please please any positive stories or help would be much appreciated.

Regards Lee (stoke on trent, United Kingdom)

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MariaH's picture
Replies 11
Last reply 11/21/2011 - 6:55am

So, Dave had his first checkup yesterday while on the Temodar.  No scans until 12/22, just a physical with bloodwork.  He's feeling OK, a little fatigue, but otherwise well.  He pointed out a lump he had found on Tuesday night (which he "forgot" to tell me about).  This is near his right pectoral muscle, where the bulk of his stage IV disease is.  I am worried that this may be the deep lymph node they found on the PET that had an SUV of 22.  If it is, that means that it has increased in size to the point of being palpable.  I know with other treatments, mets can swell before they start to shrink.  Is this true for Temodar too?  He's only been on the Temodar for 2 weeks.

I'll be honest, to actually feel it was frightening.  I'd like to think that I've stayed positive so far, but this shook me up.   Any thoughts?

Maria

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Charlie S's picture
Replies 2
Last reply 11/17/2011 - 7:41am
Replies by: Jackie W, Charlie S

We talked briefly  today. Brief is how to best describe his conditon right now.  But don't count him out.

Please keep him in your thoughts.

Charlie S

 

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price9103's picture
Replies 6
Last reply 11/17/2011 - 8:12pm

My husband had a melanoma removed from his L cheek which was all clear around edges.  No radiation or chemo treatments.  No problem for 20 yr, Oct. 2011, after dental work, noticed a swollen neck gland, went to doctor, given antibiotic with no change,  Returned to MD wk later and sent for C-T scan showing lump in neck, ENT doctor said it was probable lymphoma.  Biopsy done and reported to be melanoma.  PET scan results show 2 spots in neck and 1 in Left Upper Lobe.   Needle biopsy done on lung growth, shows Melanoma mets.  He is 88 yr old and is good health, they are doing heart and lung studies before deciding on course of treatment.  We are awaiting results and it is slow and stressful.  Marj

 

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cwu's picture
Replies 1
Last reply 11/17/2011 - 11:21am
Replies by: Karin L

Hi,

Has anyone participated in either the Allovectin or Oncovex trials? Allovectin is an immunotherapy injected into the tumor and Oncovex is a vaccine. Please let me know the results, side effects,etc. I want to see if either of these are viable options for dad.

Thank you.
Chau

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crazymom99's picture
Replies 1
Last reply 11/16/2011 - 5:52pm
Replies by: Janner

Because I rely so much on myself, rather than my derms to find a suspicious mole, I am scared that I might miss something because my first melanoma was 1X2 in diameter AND it was a mole that had not changed (I have pictures). I just had a "feeling".

I am a person with 100 + funny looking moles. Several are greater than 6mm, but most are smaller. Derms seem to look at the bigger ones, but now, I worried I need to take off all my moles. I know, its unrealistic, but I do not know what else to do?

Has anyone had a melanoma that small before?

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lizzykittycat's picture
Replies 6
Last reply 11/22/2011 - 8:04pm
Replies by: lizzykittycat, Charlie S, msue5, Anonymous

i fear that i'm experiencing lymphodema, but am not sure.  at this point, i've only had 2 sentinel nodes removed about a month ago.  i didn't experience the pain and swelling for about 2 weeks after the surgery.  it seemed to begin around when my (horrible) wound was debrided.  it became very "angry" and infected.  soon thereafter, i had pain starting up by my groin (dissection spot) down to my feet. 

for about the past 2 and 1/2 weeks, this pain and swelling has persisted.  i'm not sure if it can be attributed to true lymphodema because i lost those 2 nodes, or if it is a reaction to the infected excision wound.  it is tolerable, but consistent and painful.  the whole inside of my leg feels tight and hurts if i flex in different directions.  in addition, my ankle and foot is swollent non-stop.

i'm facing the lymphadenectomy in about 2 months as soon as my wound is healed to prevent infection.  i'm agonizing over the decision whether to have the surgery or not (which i've posted about previously).  the issue now is that i'm TRULY fearful of lymphodema.  if i'm experiencing it already from just the removal of 2, what do i have to anticipate after the procedure???  i feel like i'd rather not have a leg than to have to deal with this, or probably worse, for the rest of my life.

has anyone had a temporary flare up in reaction to the excision?  it was on my calf, by the way.  i have an appt with my surgical onc on mon.  i'm hoping he can provide SOME insight.  so far, he's really only said we can't tell what is going on.  :(

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