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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Jydnew's picture
Replies 4
Last reply 8/10/2010 - 1:35pm

Hi,

Wanting to share the good news with those of you who might be just starting this scary journey with melanoma.  My husband had his semi-annual onco appointment yesterday and got the fantastic news that he remans NED.  Still seeing a little hypodensity on his liver, but it's been stable for at least 2 years now, so not a concern.

He was diagnosed at age 26 at stage iiia, 1.3mm depth on his right tricep.  Surgery to remove the lesion and an SNB revealing micromets, followed by surgery to remove all the nodes in the basin.  He has been NED ever since, with annual scans, semi-annual bloodwork and onc visits.

He is now 34 and has accomplished so much in life since his diagnosis, including the births of our children (one passed away, and the other just turned 1!), buying our dream house, earning a teaching certificate and a master's degree, and finding rewarding employment as a science teacher.  Life has been good to us, even through the toughest times...

Best to you all,

Wendy

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Lori C's picture
Replies 7
Last reply 8/10/2010 - 2:37pm

Will goes for his second chemo treatment tomorrow.  His sister is coming in from Massachusetts to visit and will accompany him.  About a week ago, the elevator in his condo buidling broke for a few hours while we were out and he wanted to take the stairs (he has mets in his hips).  That was a big mistake.  The next day and for two days afterwards he had bad hip pain.  Other than that, though, he's been doing pretty well.  I really think almost all of the visible skin lesions are smaller and sort of dried up looking.  Hoping Dose 2 will be even more effective and that the liver mets will really take a big hit from this. 

However, he is depressed.  He's tired and unable to work, and seems to be struggling to enjoy things.  He is normally such a positive person that this is hard to see.  I'm worried all the time and trying hard not to let him see, but I'm sure he realizes that I"m scared.  Still, a little over a month ago, we were given such grim news that I literally expected he might die any day.  He is, from everything I can tell, actually better  and I keep hanging on to hope.  Please send him prayers for tomorrow's chemo treatment.  If the chemo can beat down the tumors sufficiently, he can get into a more targeted treatment.

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Barb's picture
Replies 6
Last reply 8/10/2010 - 2:55pm

I have a question.I'm stage 3 A Melanoma I had chest X-rays over two months ago they found several lesions doctor told me she wasn't concerned they have not changed in the last year?Anyway's my question is I have had a chronic cough for the last two months doctor again said she is not concerned.I was told by several other patients it is a sign of a recurrence or liver cancer?The cough is worse at night.I have tryed every over the counter and precriptions nothing seems to help?   

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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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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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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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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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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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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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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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My oncologist advises me that I can have injection, which I believe is done under the skin in the patient's stomach, to boost my white blood cells, presumably to help fight any infections with chemotherapy. He did warn me that such an injection sometimes give people bone pain which does not respond to normal painkillers. Further he said sometimes patients have to go into hospital for treatment to cope with the pain. I don't know the name of the drug used for the injection and was wondering if anyone has had such an injection -- if so what side-effects did they suffer, and for how long? Any information would be appreciated

Janet 

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Nebr78's picture
Replies 6
Last reply 8/13/2010 - 8:10am

I just finished my rounds of Temodar.  Then they did a CT Scan.  Dr. said nothing was growing.  I asked about a specific spot.(lymph node by

arm pit..  They called 2 days later and said my Melanoma has grown 30%.  Thanks a lot for correct comparison. What is use of taking treatment

when you get this kind of results. I have 3-4 spots in me. (lymph node, lung, back, kidney,side of face)   Now Dr. says he wants to wait for this Ipilimumab to be

approved by FDA.  I have hearts disease (over 40 yrs.) so don't know what I can take.  I wish I knew what would happen if I did nothing. The

lumps by the arm pit is about size of large 50 cent piece, and one by ear is same or alttle larger.  I have changed Dr. once and will not change

again. I will not spend what estate I have running around the country letting these Doctors make guesses on what to use.

Has anyone used this Ipilimumab medicine?   What are side effects?   I don't have any arteries left in heart, only bypasses so I  get Angina

very easily.  I am 78 yr. old male so maybe there is nothing that can be done and my Dr. just won't tell me that.  Any info. will be appreciated.

Thanks,   Retired in Nebr.

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sharmon's picture
Replies 2
Last reply 8/13/2010 - 9:03pm

We were suppose to travel Angle Flight to Huston Sunday for a Monday appointment.  Angle Flight cancelled due to bad weather.  We can drive it but it is 18 hours one way.  I contacted Md Anderson and they  were proud of the fact they are contracted with Continental and it will be (with discounts)  $953.00 each.  Then I contacted my social workder at the hospital and she sent me to Financial Assistance.  They had no idea why I would be transfered to them and referred me back to Travel Assistance.  She then told me Southwest had a fare of $639.90 each but they were on contracted with them!  What the ***+)_(*^*&%*(&(*.  I called Air Tran and found 1 stop air fare on my own for $579.00 each. 

Any one else have any ideas.  Could you any feedback you might have.

Sharmon

 

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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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mifis's picture
Replies 3
Last reply 8/14/2010 - 8:19am
Replies by: W., mifis, Janner

Hi there,

I was diagnosed with melanoma in situ on my upper left arm in May 2010. The original biopsy was done by the dermatologist and I went for a further excision of the area in June. The patho report of the 2nd excision stated that there were atypical melanocytes along the lateral margin. The plastic surgeon felt that with my skin type (fair and freckly) and background (Australian raised) it would be highly likely to find atypical melanocytes anywhere on my body and recommended to leave it and wait and watch. The pathologist recommended a further excision. I spoke with my primary and dermatologist and the derm spoke with the pathologist and I made the decision to go ahead with another, wider excision, in the search for the elusive clear margins. That was 2 weeks ago and I just got the report back and there are more atypical melanocytes. The plastic surgeon thinks I should leave it alone, but said he spoke with the pathologist, and it was suggested that another biopsy, perhaps a punch biopsy, could be taken on the same arm, but 2 or 3 inches away from the original site, to see if there were still atypical melanocytes. The thought is that if more atypical melanocytes are found, it could be fairly safely assumed that it is just my skin's long-term sun damage and not a reflection of any activity relating to the original melanoma. The plastic surgeon was careful to explain to me that atypical melanocytes are NOT melanoma cells, but I understand that the detramination is fairly subjective.

Does anyone have a recommendation for me or experience with similar?

Further, I asked the plastic surgeon to clarify for me that it was still considered "in situ" which he affirmed. I also asked him if a type of melanoma had been identified and he said that "in situ" is the type and that the other types (nodular, lentigo etc) only related to invasive melanoma. I wasn't aware of that.

 

I appreciate your responses and your help. I have been on here before with the same issues along the way, but feel I need some extra clarification with each step and I am really grateful for your support and advice.

 

Blessings!

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