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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I feel like I'm falling apart.  Started losing taste before my diagnosis - but now everything tastes bad - especially water.  Losing vision in right eye and have lots of pressure headaches above the eye.  Also, crickets and buzzing in both ears.  Anyone else?  Not sure if it's due to meds, surgery. radiation, or cancer (possible leptomeninigeal disease).  Please share you story with me.  

 

Thank, David

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” ― Albert Einstein

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pls forgive me. ooops, new to this, didnt think my replies replied, but think ive accidentally replied the same comment three times, thinking it didnt post. bloody computers. aaaaagh. ooops

today is a gift and thats why its called the present

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panda's picture
Replies 1
Last reply 12/27/2011 - 9:16am
Replies by: panda

pls forgive me. ooops, new to this, didnt think my replies replied, but think ive accidentally replied the same comment three times, thinking it didnt post. bloody computers. aaaaagh. ooops

today is a gift and thats why its called the present

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panda's picture
Replies 7
Last reply 12/27/2011 - 10:12am

pls can yu read my post on stage II melanoma i posted as anonymous and give me some advice thankyou

today is a gift and thats why its called the present

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Anonymous's picture
Anonymous
Replies 7
Last reply 1/2/2012 - 5:37pm
Replies by: snowmaneasy, kylez, Maria Elena, scots, Anonymous

hi happy xmas. i was diagnosed jan this year with stage two melanoma, one eighteenth of millimetre and had two centimetres extra cut out around where the melanoma was from my back.. Can someone tell me what i do now. my father died from stage four melanoma last year bone cancer, and it is thankyou to him that i found this on me... when i went to get my moles checked. do i go back now every five months and get blood tests? lymph tests? what tests SHOULD i get so it doesnt come back? can someone advise me PLEASE..... it is scarey. thankyou so much. :)

today is a gift and thats why its called the present

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Ashykay's picture
Replies 1
Last reply 12/27/2011 - 4:19am
Replies by: FormerCaregiver

Hi all

Apologies for not updating sooner on my Mums Yervoy treatment - time really does get away.

Mum started Yervoy around October (plz see my profile for details up till now).

Mum has had a rough trot since then. After she started the treatment, her pain seemed to incredibly intensify. This led to a week in hospital for the first time. She was out of it a lot of the time due to the morphine & other drugs she was on. At first, the registrar in the hospital had told us that this was probably due to the tumor growing. This was incredibly devastating news. However, about an hr later, Mum had a visit from her Yervoy trial doctor. He told mum that due to the sudden onset of her pain after her treatment, he actually thought it may be the Yervoy working and making her immune system go a bit crazy around the tumor. He said he has seen this sudden & early reaction in a number of his patients previously. It was a tough week though - mum lost confidence and was scared to go home to be in the amount of pain she had been. However, before she left they gave her an epidural which significantly reduced her pain - I think she was even off morphine for a bit!

Since then, she has been getting numbness and pain in her left leg (which is not the leg which was previously affected by the tumor - it had been her right leg). She's on Targin & Lyrica now. Its hard to know what she is experiencing is being caused by the tumor or that Yervoy has her immune system working hard & attacking that evil tumor! Her symptoms include: a hard spot where the vaccine has gone through on her leg, hives & itchy rash on her body including her back, extreme fatigue (sleeping 4 days on end/even midst conversation), confusion & forgetfulness, numbness in the left leg and hands, aching wrists etc. She also has incontinence (however this was present to some extent prior to treatment due to the location of her tumor).

I've read about the Yervoy side effects and a lot of these are listed in the common category. Hopefully that immune system of hers is working hard and the scans which will come after her last treatment in March will be positive. It's really difficult sometimes seeing mum being so forgetful & incapable of doing things like she used to. She has her good days and bad days, as I'm sure everyone on this forum would understand. We are just trying to take each day as it comes.

Anyway thanks for reading this, and would love to hear your thoughts. Hope you all had a lovely Christmas & wishing you a most positive New Year.

Cheers - Ashley

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Lilylove414's picture
Replies 15
Last reply 3/21/2012 - 12:17pm

So I've had MM for about 3 months now, I was diagnosed September 12th and I have stage 3. While my family and friends have been great, none of them can really understand how I feel. Praise God this site exists! I'm 25, the youngest of 3 and I'm about to start a year of Interferon in January since I already had my surgery on my arm and 2 lymph nodes out. I'm finally over the feeling of putting my life on hold and I now know it's just taking the scenic route. I believe in Jesus Christ as my personal Lord and Savior, and I know He will bring me through this! If you believe in Jesus as your Savior then you know how important knowing God is! If you would like to know Him then hit me up! We're all in this together!1

God bless,
Jaimy

If God is for us, who can be against us?

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Camp Host's picture
Replies 7
Last reply 12/27/2011 - 12:47pm

Just wondering how long.... it will be before the feeling in my foot returns... feels like my foot is in a brick

toenails look like they may fall off.. Not  one of 5 docs explained this to me just what the healing process would be... 

I know everones healing process is different... But come'on ... was told the nerves re-route about 1mm a month .. 

A strong spirit and positive attitude goes a long way....... "Everyday is different and Everyday is Better"

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FormerCaregiver's picture
Replies 1
Last reply 12/28/2011 - 1:41pm
Replies by: hope4cure1

Wishing everyone a very happy Christmas filled with peace and joy.

I think that this season gives us a real glimmer of hope that things will get better, despite the difficulties and struggles of everyday life.

Take care

Frank from Australia

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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I would like to wish each and every one of my carepage friends the warmest and deepest greetings this Holiday Season. We been through a lot and with the comfort of family and friends we can beat the Beast Melanoma.

It has been truely a renewed emergence in Melanoma therapy this past year with TWO therapies being FDA approved that extends survival for us Melanoma patients. At this time of the Season, please relect on the Worriors that are no longer with us, but made this all possible by offering their life to the progress of science.

They truely have shown us the gift of giving.

 They truely are my/our HEROS!!!

We will miss them dearly.

Happy Holidays

Jimmy B

“It is not the strongest of the species that survives, nor the most intelligent, but the one most responsive to change.”

~Charles Darwin~

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rjcravens's picture
Replies 1
Last reply 12/27/2011 - 8:23am
Replies by: scots

I am taken back by all the Christmas Blessing we have recieved this year. There are so many angels on earth with such big hearts. My kids had one of the best Christmas's ever thanks to all the support we recieved from family and friends. And even though I catch myself wondering if this is my last Christmas with them, my overwhelming fears are actually getting better. (Plus I am taking the Cymbalta)

  I stopped taking the Ritalin for fatigue last week and have found myself overly tired all over again. However, I keep reminding myself that I am halfway through the year of interferon treatments and that there is a light at the end of the tunnel. My family has been very supportive in putting up with my tired and grouchy butt. The only other issues I seem to be facing is the daily nausea and leg pains on the days after injections. It is such a deep pain, especially in my pelvic area and upper legs. It doesn't help after working twelve hour shifts at the hospital. Any suggestions for this? I have tried creams, heat, Norco....it is so deep that it seems like nothing can get to it. I have my husband use his fist and put pressure on my legs just to get some relief. (not sure why that helps)

  I go back to see oncologist in Jan and the Dermatologist in March. Praying that no other issues arise.

May everyone have a Blessed and Merry Chirstmas and a safe and Happy New Year. (i am so burning the 2011 calendar! What a year....geez)

 

Rachel - Stage IIb  Area popped up on arm in Jan 2011, surgery to remove Feb 2011, malignant melanoma.  Not in lymph nodes. Interferon started in May 2011. First month IV then injections. Scared to death of returning.

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rjcravens's picture
Replies 0

I am taken back by all the Christmas Blessing we have recieved this year. There are so many angels on earth with such big hearts. My kids had one of the best Christmas's ever thanks to all the support we recieved from family and friends. And even though I catch myself wondering if this is my last Christmas with them, my overwhelming fears are actually getting better. (Plus I am taking the Cymbalta)

  I stopped taking the Ritalin for fatigue last week and have found myself overly tired all over again. However, I keep reminding myself that I am halfway through the year of interferon treatments and that there is a light at the end of the tunnel. My family has been very supportive in putting up with my tired and grouchy butt. The only other issues I seem to be facing is the daily nausea and leg pains on the days after injections. It is such a deep pain, especially in my pelvic area and upper legs. It doesn't help after working twelve hour shifts at the hospital. Any suggestions for this? I have tried creams, heat, Norco....it is so deep that it seems like nothing can get to it. I have my husband use his fist and put pressure on my legs just to get some relief. (not sure why that helps)

  I go back to see oncologist in Jan and the Dermatologist in March. Praying that no other issues arise.

May everyone have a Blessed and Merry Chirstmas and a safe and Happy New Year. (i am so burning the 2011 calendar! What a year....geez)

 

Rachel - Stage IIb  Area popped up on arm in Jan 2011, surgery to remove Feb 2011, malignant melanoma.  Not in lymph nodes. Interferon started in May 2011. First month IV then injections. Scared to death of returning.

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j.m.l.'s picture
Replies 9
Last reply 1/5/2012 - 11:21pm

Need help..suffering from headaches and major blurry vision. This is after 3 rounds of IPI and now on Dacarbazone.. Going back and forth. Taking steroids help the matter but I have been on roids for 3 months. Not good. When I lower the roids, symptoms get worse. Eye dr. says I have inc. eye pressure (taking drops). Onc. doesnt know, neurol doesnt know.

what do I do if they dont know. Any thoughts. Please!!!

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Anonymous's picture
Anonymous
Replies 1
Last reply 12/23/2011 - 6:03pm
Replies by: Julie in SoCal

Hi Julie,

Hope things are going well for you. Are you back in the states?

I have read your posts that Dr. O'day is your doctor. Have you been in contact with him??? I am a former patient and would like to hook up with him now that he left Angeles Clinic.

Please post any information you might have on his new practice.

Thanks,

Wendy

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jmmm's picture
Replies 9
Last reply 12/31/2011 - 12:34pm

My husband had a craniotomy on Nov. 30 and gamma knife yesterday. We were hoping to take our children to Disneyworld mid-January. We're not sure how much time he has and want to squeeze in as many memories as possible. We were excited until yesterday when the Dr said no driving for 6 more weeks. He will have weaned off seizure meds the week before we're planning on going. He's never had a seizure, but the Dr. Is concerned about seizures. I will be driving the entire 16 hours...not worth risking it, but I'm wondering if anyone else has traveled this soon after surgery? The nurse looked at me like i was crazy when I mentioned it. His cancer is still progressing and besides being a little tired is doing ok for now. How do we balance the risks versus not wasting the time we have?

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