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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Terra's picture
Replies 5
Last reply 8/14/2010 - 11:38am

I have been trying to follow everyone's posts - but it seems so busy out there.  We also have had a busy summer.  To recap:

Spring scans showed a nodule on Derek's left lower lobe, surgery confirmed it was mel and of course stage IV

PET/CT after surgery showed uptake in two more spots on left lower lobe, 1 in right hilar region of lung (uptake of 62), and 1 in liver 

Our onc in Kingston suggested IL-2 in Buffalo or a clinical trial with IL-21 vs DTIC in Kingston.  She veered away from IPI saying she had heard more about side effects then success (which I thought was a little strange).

We went to see an onc at PMH in Toronto and felt really good about this appointment.  We discussed Derek's history at length, discussed some possible options, he doesn't like IL-2 because of toxicity and has had bad experiences with it (Derek really didn't want to do this anyway), but we did settle on a sort of loose Plan A, B, and C.

Derek will be rescanned this week along with an MRI of brain (which is frightening), he is unfortunately BRAF negative but they are testing him at PMH for the NRAS mutation so that he could qualify for their fall phase Ib trial testing BKM120 (P13K) and GSK1120212, then he will start IL-21 vs DTIC in Kingston, if randomized into IL-21 and it doesn't work he could begin another chemo drug in a trial at Sunnybrook, then onto either ipi or the new trial at PMH, if in DTIC and it doesn't work we will go right to ipi or the trial. 

 

Just looking for some thoughts - good or bad comments about our 'plan' - I have some confidence that this is the right path for us.  We have a 3 and 1 year old and Derek wants very much to be close to them so this will allow that - I just don't want him to miss anything.

 

Terra 

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Rebecca and Bob's picture
Replies 6
Last reply 8/13/2010 - 11:01pm

I'm so happy but still so stressed. Tomorrow I will feel better. The crazy part is, it's not me it's my husband but I seem to be more stressed than him.

 

I wanted to share the good news. Keep fighting. Bob is Stage IV since April 2008 lung mets, IL-2  what appeared to be a complete response but intestinal mets showed up  a year after the lung mets. Surgery for the intestinal mets. NED now since July 2009. Thank you God! Thank you NIH.

Rebecca

Believe

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My mom was just diagnosed with stage 4 malignant melanoma. She is 54 years old. She  has the choice to go for the IL 2 therapy or the  option to do the clinical trial with B RAF inhibitor vs decarbazine and if it doesn't work she can THEN go for the IL 2 therapy. Our concern is that she may get sick or too unhealthy to do the IL 2. Can anyone on her tell me how sick you get on this clinical trial and if it is worth trying before going for the IL 2.

Any information on B RAF vs Interleuken 2 therapy would be greatly appreciated. I have done searches on the internet, but I would love to hear some personal stories on both therapies, pros and cons. This is a huge decision for her and i want her to have as much information as possible.

 

My next question is how are you all keeping yourself healthy. I have looked up all foods that have antioxidants and try to incorporate them in each meal. She is taking 1000 micrograms of vitamin D and is taking a multivitamin. Other than that I am trying to keep her on a balanced diet. I want her to conserve as much energy as possible, but excercise as tolerated.

 

Thank you so much in advance for any information!

Tricia

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Dale from PA's picture
Replies 5
Last reply 8/13/2010 - 1:56am

Hello All:

I was diagnosed with melanoma on my lower left back in early January, 2010.  I immediately had that little sucker cut right out.  The surgeon oncologist said that I was Stage I.  Great!  Eight months later I go to my dermatologist for my quarterly checkup and she is sure I have another tumor on my upper right shoulder.  She took a biopsy today but, of course, I will have to wait until Monday to get the results.  My question is, is this normal?  It seems inconsistant that a Stage I could spread that far, that fast.  Has anyone else had such a situation occur?  Am I facing surgery every eight months for the rest of my life?  Unfortunately, when they did the original surgery, they could not biopsy the lymph nodes since they were located deep in the belly and not accessable by  needle.  They would have had to do major abdominal surgery to get to them.  It has me worried that I may really be a Stage III.  Any thoughts from the experts?

                                                                                      Dale

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Nancy's picture
Replies 7
Last reply 8/18/2010 - 3:27pm

I've heard you don't know if one is respondng to IPI for three months.  Buddy had one tumor shrink and the others that were measured increase in size.  He's had no side effects, the fatigue was there already due to craniology and WBR--He has numerous tumors - liver, lungs, spleen and the brain mets.  Dr. said he is anemic, will have blood transfusion next week.  Also, if he has any more imbalance while walking, he will need MRI - said he could get gamma knife and still continue with IPI- do you think they would do a gamma knife to brain mets if he has more than 3?  Is there a pill or something for blood - H&H is 11 - going south quickly, will transfuse at 9 - has blood work Sunday.  Is there anything to do to prevent a seizure that we are not doing now? 

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betsyca's picture
Replies 4
Last reply 8/11/2010 - 10:26pm
Replies by: betsyca, Anonymous, Nancy

The doctor noticed a spot on Ron's back at his checkup.  It is a raised bump, no color, but with a ring a around it that appears to have no pigment.  I wasn't concerned, as there has been so many weird skin things during interferon.  Does this sound like anything familiar here?

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katd's picture
Replies 14
Last reply 9/24/2010 - 1:18pm

Any one out there using interferon alpha treatment. Dr are telling me I cannot have another Pet/Ct Scan until I have gone thorugh the treatment (which I have 9 1/2 months left) and then wait 1 month.

katd

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katd's picture
Replies 1
Last reply 8/5/2013 - 1:11am
Replies by: JenniferKincaid

Any one out there using interferon alpha treatment. Dr are telling me I cannot have another Pet/Ct Scan until I have gone thorugh the treatment (which I have 9 1/2 months left) and then wait 1 month.

katd

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Linda J's picture
Replies 6
Last reply 8/12/2010 - 6:59pm

It has been about 5 years since I have used this site - a lot has changed. 

Currently I am upset and confused and would like some feedback from this community to help ease my heart/mind.

My initial MM occurred in my upper back in 2001.  I had a local met in the skin just below the initial site and 1 lymph  node with a very small MM.  I had an axilla dissection and then about 6 years later I had a very small subcutanious lump taken out of that same dissection site that was also MM.  I had radiation and nothing has happened to that axilla since - I call it my perfect armpit since no hair grows there anymore :-)

About 4 months ago I suddenly had a lot of pain in my hip/buttock - to the point that I couldn't really sit without discomfort.  It felt like I had a muscle knot in that area.  The pain went away and then it came back again about a month later.  Again, the pain went away.  Then at the beginning of June I felt an enlarged lymph node in my groin - it popped up suddenly and was very painful.  I went to a GP who put me on anti-biotics.  He left the "muscle knot" on my hip and thought it could be a lipoma so he sent me for an ultrasound.  The ultrasound said that the "knot" was some kind of vascular tumor. 
My oncologist thought the "tumor" was also just a lipoma so he sent me to see a surgeon.  By the time I got to the surgeon, the skin above the "tumor" had become very inflammed, red, swollen and very very sore.  It was like a band of pain that went from my hip to the lymph nodes in my groin. 
The surgeon thought that it looked very much like an infection of some kind.  He put me on Keflex which helped with the pain and the redness has gone down a bit and the lymph node is no longer sore.
In the mean time, I had a regular appointment yesterday with the oncology surgeon who took out that little lump in 2008. He looked at the lump on my hip and told me that it is probably melanoma - which he said is likely a met from the very first one on my back in 2001!!!!!!  WHAT!?  He did a needle biopsy and I have an MRI on Friday and then get the results on Tuesday.

I am very confused.  Has anyone else every had a MM that got inflammed like an infection and responded to antibiotics?  How could my first MM travel down to my left butt/hip without leaving anyother pieces in other pleaces - all my scans and blood work came back normal late June.  How could three other doctors who all knew my history, not think that this lump is melanoma.  I don't know what to think.  I am going crazy.  It if is MM, it is very big compared to the other ones I have had, and now there is lymph node involvement.  I don't know what to do.  The two different surgeons seemed to both be so sure about what they think it is, but they both think it is something different. 

I am so upset.  Please send me your thoughts. 

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Sherron's picture
Replies 11
Last reply 9/13/2010 - 8:50am

Hi everyone,

My husband (Jim) is the one who has had no surgery other than to remove the original Melanoma and then to remove a local recurrence last year.  He has progressed to Stage III as his cervical lymph node is quite large about 1 1/2 inches, round like a ball sticking out on his neck.  He is only doing alternative and herbal.  He did not do the WLE or the SNB...As of yesterday, he has a pain on the same side as the Melanoma on his right side, going into the stomach area.  He thought he might have pulled a muscle as he has been doing work around the house...then decided it was just probably gas or something like that.  He did nothing yesterday, but sit it the chair.  I came home from work, he was still in pain when he moved, even his leg .., I put one of those icey hots things on it and barely put pressure and he acted like it really hurt.  I am wondering could this be something else, or am I just being alarmed because he is not doing any other treatment...?  My mind is racing.  Any input would help me, please.  I know most of you are doing regular treatment, but my husband's decision was to only do natural...He is still a fighter and a warrior, just fighting a different way.     Any input would be greatly appreciated.  Thank you so much.

Take Care,

Sherron, wife to Jim

 

 

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Tracy Chicago's picture
Replies 4
Last reply 12/7/2012 - 12:48pm
Replies by: Anonymous, Sharon in Reno, washoegal

Last night I noticed a mole that had changed significantly in what seems overnight. It has the same characteristics as the melanoma I had removed from my arm. I'm anxiously waiting for my derm to squeeze me in for a biopsy and I can't help but wonder if this mel will one day spread to my lymph nodes in my groin or leg. My primary had a 5% chance of spreading to my lymph nodes and it did spread to my armpit.  Gotta think positive, but it's so hard when you've already been through it before.

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Hi there everyone,

Thank you for taking the time to read my words and hopefully giving me some guidance.  I want to beat this horrible monster, I have so much to live for, and much determination, love and faith to rely upon....  Im just a little lost atm and wondering If I am being realistic in thinking I can beat this. 

My name is Simone, im 34, and live in Melbourne, Australia.  I was first diagnosed stage IIc in 2005 & remained NED until 6 weeks ago when I found a lump under my arm.  It was confirmed mel and scans showed many spots on my liver as well, making me a stage IV suddenly :-(  

I was immediately tested and found positive for the V600E BRAF Mutation and therefore went into the BRIM 3 Phase III Study for patients with this gene to receive R05185426 or Dacarbazine.  Obviously my oncologist, myself and my family were hoping and praying that I got the R05185426....  BUT unfortunately Ive ended up with the Dacarbazine.  I was shattered but had to pull myself together quickly to start chemo. 

Ive now had 2 rounds of chemo, have handled it very well, and the lump under my arm does feel to have shrunk, BUT I am just SOOO SCARED.  I am having a scan done in 2 weeks, and I am dreading it...  What if the results are worse?  Could I still beat this?  Apart from melanoma, I am in excellent health and fitness, and am eating well and exercising.  

I am wondering 'Is this the best treatment for me atm?', "Would i be receiving the same or better treatment options if i was in the US or Europe?'  "What have other patients tried who have been in my situation?'  "Any success stories with Dacarbazine? or other chemo?'

Please help me, Im feeling so alone and frightened :-(

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Rebecca and Bob's picture
Replies 11
Last reply 8/11/2010 - 5:00pm

Hi everyone,

 

The stress of scans is setting in. Bob had delayed his scans because one of our sons hurt his head and had to have staples. He was really due back sooner. It's so tough with these little guys, they keep us so busy.

Any extra prayers, voodoo or zen or whatever you can send our way we could use it. He goes in tomorrow for scans and it will a year since his last surgery.

 

We won't know results until Thursday.

Rebecca

Believe

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ValinMtl's picture
Replies 2
Last reply 8/10/2010 - 7:01pm

Has anybody been on this trial?   I am still waiting for ipi to arrive in Montreal but it's taking so long was wondering about doing this one first which is in Boston. Would appreciate any thoughts on this.  Val

Live Laugh Love Nothing is worth more than this day!

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MaryBZ's picture
Replies 1
Last reply 8/10/2010 - 12:50pm
Replies by: MaryBZ

I see the $20,000 target was reached and even surpassed!!!yes  To me that is amazing since I think the bracelet campaign began this May  (correct me if I am wrong).  I have passed the link on to family and friends and posted it on my Facebook page as well.  I ask God each day to help me play some part in spreading the word about melanoma.  So even though sending an e-mail and using Facebook are small in the eyes of some, it's what I can do for nowsmiley

MaryBZ

You don't know what your future holds but you know who holds your future!

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