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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meldad's picture
Replies 4
Last reply 12/29/2012 - 7:54pm
Replies by: dellriol, meldad, Josh

Hi everyone,

This is my first time posting but I come on here almost daily to read everyone's updates.
My dad has been on Zel for about 5 months and has had most of the side effects everyone has posted about. The past week or so his had a sore/swollen knee. I'm just wondering if anyone else has experienced this? I know joint pain is very common while on Zel. His having a scan on his knee in about a weeks time but I just worry about every little thing now.

Hope you all had a lovely Christmas!

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DeniseK's picture
Replies 11
Last reply 12/29/2012 - 11:02pm

Well I met with oncology radiologist today, all my doctors agree to do WBR. There is just one brain tumor but they're afraid there are other cells that could start growing. He said WBR can be done again in about a year and gamma knife or SRS can be done in a month or two if the WBR doesn't kill the one tumor completely. I didn't want to do WBR but I'm confident my doctors are doing what's best. Hopefully this will work with the zelboraf. Still waiting on the z.

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

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Erinmay22's picture
Replies 4
Last reply 12/30/2012 - 11:20pm

Just curious what supplements folks are still taking while on ipi. I have completed all 4 doses (and last scans showed growth of a lymph node). I've asked my doctor about this but haven't really gotten a straight answer. Right now I've been taking an iron supplement (last may was very anemic). I'd like to start taking b complex again and vitamin d. I asked about getting vitamin levels again checked but again haven't had a response yet from my doctor.

Hope everyone had a great holiday.
Erin

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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Anonymous's picture
Anonymous
Replies 10
Last reply 1/14/2013 - 10:21pm
Replies by: jamescarter, JakeinNY, Anonymous, jag, LynnLuc

There is a lot of talk about sugar, avoiding sugar, etc. . . I'm just wondering what scientific evidence exists that shows sugar causes cancer or makes it worse, etc. . .   Isn't sugar like everything else (alcohol, meat, etc...). . everything in moderation?

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thrashter's picture
Replies 5
Last reply 12/28/2012 - 6:57pm

Was home for the holliday after my first week of Bio Chemo. The experience was okay rough but do able next round on the 3rd of January. 

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sharmon's picture
Replies 5
Last reply 12/28/2012 - 1:13am

Hi,  Brent is at Moffitt this morning getting his third infusion of anti pd 1.  His pain is managed and his blood work is good.  Dr. Weber committed that he is seeing  30 percent or better response rate.  Brents 4th infusion is Jan. 16th and then scans on the 6th of February.  Keeping our fingers and toes crossed.  Prayers and Blessing for each of you.   Sharon

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heg50heg's picture
Replies 7
Last reply 12/27/2012 - 12:23pm

Hello all, I am happy to announce my 2 year aniversery from being diagnosed stage 3 melanoma. I do not post much here but do check in once in awhile for information and updates on treatments and so forth. This site has helped me cope with this cancer for the last 2 years when I read some of the stories of others on this forum. From the first time I found out I had melanoma and my surgeon told me the survival rates and all I thought i was doomed. I have made 2 more Christmases and also am finally being able to not worry about mel all the time. My family Dr. just recently told me my chances of reoccurrence is very slim since i made it 2 years now, however the oncologist disagrees with that. Anyhow i am happy to be NED this long and hope it lasts for many more years. Thanks to everyone that posts here for peole to get so much info about melanoma, as i seem to find more answers here than I can at a Drs office. Happy new Years everyone and I hope every person on this site will be here next year to read my third aniversery post.

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JonathanB's picture
Replies 11
Last reply 12/27/2012 - 9:52am
Replies by: sFELDMAN, JonathanB, DeniseK, Anonymous, Swanee, jmmm, washoegal

I am a 47 year-old man, Stage IV, two young sons, determined to do everything possible to keep myself alive.

After a year of surgeries (primary excision on scalp, neck dissection, excision of various skin lesions), my latest PET scan from last week showed the melanoma has spread to my shoulder area and back of both legs (visible bumps), along with some yet to be determined small nodules in the lungs. My oncologist has run the BRAF gene test, determined that I qualify and wants me to begin taking Zelboraf (vemurafenib) this week. The question I have is: Should I press my surgeon to remove the visible turmors as quickly as possible, or should we wait to see if the Zelboraf is working, and ideally shrinking the tumors I can see protruding through the skin?

The information in this discussion forum has been invaluable to me and I sincerely thank all those who have contributed. The journey is difficult for all of us, but can be made easier by sharing helpful stories and information not always available from the medical community.

JonathanB 

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Over the past couple of months that I have been reading the posts on the Forum, I have seen this question raised.  I came across a just published aritcle, or at least the abstract of an artcle, on the topic.  A read of the abstract makes me think that side effects from PI  would be more of a "bear," as one poster described them than conventional. The positives of PI seem to be linked to  its convenience in administration but not length of application period.   A link to the abstract is below.

http://journals.lww.com/immunotherapy-journal/Abstract/2013/01000/Real_life_Experience_With_Pegylated_Interferon_and.7.aspx

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Josh's picture
Replies 6
Last reply 12/28/2012 - 6:17pm
Replies by: Josh, DeniseK, dellriol, Erinmay22, Anonymous, washoegal

Hello All,

There's a lot of serious talk here about serious symptoms, serious side effects, and serious outcomes. I'd like to share a more frivilous side effect if I may.

For about a year, I was on Zelboraf, and perhaps 6 months after starting the drug, my feet bagan to look really dry and, frankly, gross. For some reason, I didn't associate this with Zelboraf, simply thought that at forty years of age, I had turned into a man with very ugly feet. Having stopped Zelboraf two months ago, I'm pleased to report that my feet are once again gorgeous. Seriously, you've never seen such sexy feet. The moral of this story is that if you're on Zelboraf and your feet are disgusting, don't blame age or your moisterizer or even God. Blame the drug.

And a happy holiday to all!

Josh 

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mama1960's picture
Replies 5
Last reply 12/25/2012 - 1:26pm

I am so thankful to able to spend another Christmas with my family! I am recovered from surgery and feel really good. I hope every patient and caregiver affected by this terrible disease has the best possible holiday.

It is what it is.

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mom.of.2.littles.MIS's picture
Replies 1
Last reply 12/25/2012 - 9:32am
Replies by: buffcody

Hi there

I am new here.

 

I was diagnosed w. Melanoma in situ 10 days ago, on my neck and was able to have a wide excision done the same day.  The margins came back clear.

 

So I thought phew....

 

well 10 days later, I just happened to feel a palpable lymph node the size of a pea in my posterior cervical lymph nodes.  This is just 2cm or so away from the edge of my incision.

 

 

I am so nervous ;/

My derm said to wait it out a few wks 

 

I chose to go ahead and see my family dr and a gen surgeon who I have seen once prior for unrelated issue.  I will be seeing them both next Thursday (27th Dec)  I have a huge deductible, so I also wanted to get these appts taken care of as deductible was met, but who am I kidding, I am getting seen b.c I want to be thorough and I want to get it biopsied if need be....

 

I am not sure of what my questions are...

 

Does anyone think I am jumping the gun? I have 2 tots at home, I really feel like I want to nip this in the bud ASAP.  I also am not sure what I am wanting the drs to tell me this Thurs?  It seems so sketchy to me that it is so close to surgical site and to be palpable...I understand that it could be from post-op recovery from the MIS surgery/excision.  But I just am not sure.....Should I be thinking I will have it biopsied? or a scan? I have heard they can do CT scans? I am allergic to iodine, which means I couldn't use contrast, so I am not sure I could have that done.  What is the lymph biopsy like? Is there risk of spread when they remove the node? or risk of lymphedema locally??  I'm sorry for all the Qs, thought a patient perpsective would help me to think more clearly...

 

Anyone heard of this happening with MIS?  I know I am supposed to be happy that I was in the 99% clear range and I totally was until I accidentally felt this lymph node.  I have never felt a palpable post cervical node prior, I def have felt ant. cervical w. sore throat or allergies/sinus issues etc...

 

Thank you for taking the time to read

Any advice would be appreciated

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mom.of.2.littles.MIS's picture
Replies 2
Last reply 12/24/2012 - 8:25am
Replies by: Janner, jmmm

Hi there

I am new here.

 

I was diagnosed w. Melanoma in situ 10 days ago, on my neck and was able to have a wide excision done the same day.  The margins came back clear.

 

So I thought phew....

 

well 10 days later, I just happened to feel a palpable lymph node the size of a pea in my posterior cervical lymph nodes.  This is just 2cm or so away from the edge of my incision.

 

 

I am so nervous ;/

My derm said to wait it out a few wks 

 

I chose to go ahead and see my family dr and a gen surgeon who I have seen once prior for unrelated issue.  I will be seeing them both next Thursday (27th Dec)  I have a huge deductible, so I also wanted to get these appts taken care of as deductible was met, but who am I kidding, I am getting seen b.c I want to be thorough and I want to get it biopsied if need be....

 

I am not sure of what my questions are...

 

Does anyone think I am jumping the gun? I have 2 tots at home, I really feel like I want to nip this in the bud ASAP.  I also am not sure what I am wanting the drs to tell me this Thurs?  It seems so sketchy to me that it is so close to surgical site and to be palpable...I understand that it could be from post-op recovery from the MIS surgery/excision.  But I just am not sure.....Should I be thinking I will have it biopsied? or a scan? I have heard they can do CT scans? I am allergic to iodine, which means I couldn't use contrast, so I am not sure I could have that done.  What is the lymph biopsy like? Is there risk of spread when they remove the node? or risk of lymphedema locally??  I'm sorry for all the Qs, thought a patient perpsective would help me to think more clearly...

 

Anyone heard of this happening with MIS?  I know I am supposed to be happy that I was in the 99% clear range and I totally was until I accidentally felt this lymph node.  I have never felt a palpable post cervical node prior, I def have felt ant. cervical w. sore throat or allergies/sinus issues etc...

 

Thank you for taking the time to read

Any advice would be appreciated

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london22's picture
Replies 5
Last reply 12/27/2012 - 1:35am
Replies by: BrianP, Snickers60, vicuk, Swanee

I am the son of a woman, 63, diagnosed with melanoma. The melanoma is currently underneath the armpit and quite large (large marble). A CT Scan has come back clear although there is the smallest sign of cancer in the 8th rib. The Doctor has suggested Zelboraf for now. We are waiting for the drug to come through and may have to start a little chemo before we receive it (NHS UK). I am desperate for everything to be well. I lost my Dad when I was 15 and am 22 years old now. I am writing for support and advise about what we mght expect. I am unsure what stage my Mum should be placed under as it is ony in the 8th rib and not yet in any organs. I love her so much the panic sets in that I may be losing her. I need help and support from my new fellow warriors. 

Loved today and forever

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DA Boston 42's picture
Replies 1
Last reply 12/23/2012 - 5:18pm
Replies by: NYKaren

Has anyone used Imiquimod with success? I think some people call it Aldera.
Thanks,
Don

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