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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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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HelperDaughter's picture
Replies 7
Last reply 11/16/2011 - 10:15pm

Hi,

We got some not so good news today.  My mom finished her IPI treatments.  December 1 is "week 20" when they supposedly do the scans that show if it's working or not.  Today, she had a brain scan that showed a new tumor in the back of her brain.  it grew in 3 months.  She had had a previous met to the brain that was zapped by SRS and is now totally gone (per same brain scan).  This second tumor is bleeding.  they don't know how big the actual tumor is because of the blood, but with blood included it is 1.5 cm in maximal dimension.  My mom had some swelling following the first SRS treatment (both tumors have been asymptomatic - she has no neurological deficits whatsoever - not even a headache).  due to the location of this new tumor (back of the brain), SRS therapy is undesirable because swelling from it could potentially affect her eyesight.  the plan is to remove the tumor and the hemorrhage surgically, then zap it with the SRS.  once the mass is removed, swelling from SRS is apparently less of an issue.   her surgeon literally told her that since it's on the surface, it'll be "a piece of cake."  But, i can't help but feeling like it's eating a piece of cake while you're going down on the Titanic, you know?

I just feel like my mom is getting the sh--ttiest bum rap around - pardon my friench.  She's braf negative, she's got brain mets (disqualifies you for trials), she has psoriasis (autoimmune disorder that can disqualify you for trials), she has visceral mets (that are actively bleeding and causing her to become anemic and require bi-weekly transfusions).  Literally in July of this year we went shopping together and she was fine - absolutely fine.  it was July, just four months ago.  now she's too tired to grocery shop.  is it the IPI or is she dying?  i know brain mets and visceral mets have like the worst prognosis around.  i just feel like we can't get a break.

I'm scared i'm never going to get to go shopping with my mom again. do you think it's OK to cry in front of her?   sorry if this is a stupid post.  i'm just so scared. 

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crazymom99's picture
Replies 12
Last reply 11/16/2011 - 4:56pm

You can read my profile for more info, but I have a weird case of Stage 3. At least that is what my oncologist says. 

Needless to say, I want to be aggressive because I have two kiddo's under the age of 3.

My oncologist suggests a year of Interferon, but as all of you know, Interferon is not the best treatment for stage 3. At least that has been the case in my family where Melanoma is a household name.

I want to go strait to BioChemo or Ipilimumab, but he says that is not standard treatment. Am I crazy for wanting to do that? And is it even possiple? Has anyone ever done that? I know its no picnic, but I don't feel like there is a choice.

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AlisonC's picture
Replies 6
Last reply 11/19/2011 - 1:59pm
Replies by: Lisa13, lhaley, fgilbert63

Hi wise MPIP-ers.  Asking again on behalf of a friend who - as you can imagine - has a lot on his plate right now.  He has had craniotomes for 2 mel mets intracranially in the last 2 weeks and last Thursday had GK on the third and last.  We are both working in Asia.  His (American) doctor here says to try for Zelboraf or Vemurafenib or try Ipi/Yervoy if he is BRAF neg. There is some suggestion of follow up radiation (not WBR) for the tumour beds that have recently been cleared.   His U.S doctor (Mayo Clinic) on the other hand,  says don't waste the "silver bullets" of BRAF/Ipi while you're technically NED and to monitor closely with a view to adjuvant treament if/when there is recurrence.

If it were me I would want the reassurance of something systemic but I am out of touch with current stage IV best practice.  Do any of you have thoughts or evidence either way for this decision ? 

any and all advice and opinions gratefully received - with much thanks to those people who are still kicking mel in the face every day....

 

AlisonC

Stage IIIB

NED since 2001

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AlisonC's picture
Replies 1
Last reply 11/19/2011 - 10:02am
Replies by: Lisa13

Hi wise MPIP-ers.  Asking again on behalf of a friend who - as you can imagine - has a lot on his plate right now.  He has had craniotomes for 2 mel mets intracranially in the last 2 weeks and last Thursday had GK on the third and last.  We are both working in Asia.  His (American) doctor here says to try for Zelboraf or Vemurafenib or try Ipi/Yervoy if he is BRAF neg. There is some suggestion of follow up radiation (not WBR) for the tumour beds that have recently been cleared.   His U.S doctor (Mayo Clinic) on the other hand,  says don't waste the "silver bullets" of BRAF/Ipi while you're technically NED and to monitor closely with a view to adjuvant treament if/when there is recurrence.

If it were me I would want the reassurance of something systemic but I am out of touch with current stage IV best practice.  Do any of you have thoughts or evidence either way for this decision ? 

any and all advice and opinions gratefully received - with much thanks to those people who are still kicking mel in the face every day....

 

AlisonC

Stage IIIB

NED since 2001

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