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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katd's picture
Replies 15
Last reply 11/5/2014 - 2:21pm

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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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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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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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 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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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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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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babybluiz's picture
Replies 9
Last reply 8/14/2010 - 10:45pm

My name is Laura. I recently lost my husband to the Beast in May. I am having a rough time dealing with his passing. Wanted to know if there are any other widows or widowers out there to talk with. It is so hard to go from living, breathing melanoma for so long as a caregiver, to just stop now. I would like to help in any way possible to get the awareness out there for melanoma. If anyone knows of any volunteer work in Colorado. I would love to help. I have never done this before but would like to set up a support group specifically for Melanoma patients, survivors and caregivers. My husband and I looked and looked for one but never was able to find one. I would like to change that. I am in Colorado Springs but was thinking of having it based out of Denver due to being a little more centralized Colorado. So people from around the state would be able to participate if they wanted. If anyone would be interested in attending a support group like this please let me know. As I mentioned before I have never set up a group like this so any advise on how to go about doing so would be helpful as well.

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nicoli's picture
Replies 10
Last reply 8/15/2010 - 7:59pm

Hi, just wanted to pop in with some good news.  I just received the results of my recent PET scan and blood tests. ALL GOOD! No sign of melanoma returning. Stage III, NED (No Evidence of Disease) since February  2010. 

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

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Lori C's picture
Replies 5
Last reply 8/15/2010 - 6:42am

Will had his second treatment of cisplatin and Taxol Tuesday.  He's doing okay but is still struggling with hip pain and occasional other pain.  His doctor is going to increase his fentanyl patch dosage to address this. 

It's very hard to say how he's doing.  He had one nasty lesion on his head that has dried up and shrunk considerably, and one on his chest is also smaller.  He is going to have a scan on Aug. 30 and is scheduled for more chemo the next day.  He was sad today - just emotional and thinking about dying a lot.  He has days like this and they are so hard.  I am still being hopeful - it's nearly Sept and we were expecting to perhaps lose him in May, and he's definitely not worse.  On July 9 his former oncologist pretty much told us he could go into liver failure at any time and obviously that has not happened either.   But whenever he has a bad day I'm always afraid it's the start of a downhill slide, so keeping optimistic is tricky.  His nurses and doctors at Rush continue to be very helpful and pro-active, and that is a huge relief.

Please keep him in your thoughts and prayers. 

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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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Bill G's picture
Replies 2
Last reply 8/14/2010 - 10:47pm
Replies by: Tim--MRF, Sherron

Haven't seen her post for some time.  Hope all is well

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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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liz in Aust's picture
Replies 23
Last reply 3/27/2011 - 9:36am

Hi I am 36 and live in country Australia.

I was diagnosed in 2006 when my baby was 8 weeks old.

Had surgery in May 2006 to remove 3 large tumors from my adbo, along with 3 section of my small and large intestine.( the diesese was in the myestenty of my bowel) had more surgery in 2007 to remove 1 small tumor from beneath my kidney and i had then been clear for 3 years just having blood tests and CT scan every 3 - 6 months.

I had a recent positive scan in June after feeling a bit "off" and now have 2 main tumors in my abdo and many small nodes, they tried to surgically remove these but when they operated thought there was too much diesese to be able to completely remove it all, so did not want to put me though a huge operation and recovery. So they only removed one small easy to get to tumor.

They tested the tumor for the Braf mutation and found it to be negative which was very disappointing.

I have just started DTIC (or dacarbazine) and have finished the first cycle. they will rescan me with a ct after 3 cycles to see how it is going. Currently my belly is quite swollen and tender but generally feel ok.

If the DTIC  does not work they plan to give me Ippiliumabab in Melbourne.

I see a local oncologist in my home town of Albury and Prof Cebon ( Mel specialist in Melbourne). Being a country patient it makes it hard to get info on treatment options etc.

I am feeling quite desperate and wanted some advice on other options people have tried that I could also look at, that maybe I have not considered or been offered, and appreciated any info.

Thanks Liz 

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Sharon in Reno's picture
Replies 16
Last reply 8/15/2010 - 6:32am

Hi All...just an update on what I'm doing...

Last Friday I was doing a PET scan, was in the machine and 30 minutes go by and I'm crying in pain, it's my back right where the #4 rib is, digging in my back. I can't do it and beg the guy to let me out, he does. They want to sedate me but I don't have a driver..oh well I say, catch me next time. I go do my left arm ultra sound, no problems. Monday I do a CT scan (no problems) results are back and I now have 2 new lesions on my chest wall right next to my #4 rib....flash forward after seeing onco & surgeron...they want to do day surgery  on Aug. 31. So surgery is set to remove the 2 new lesions on my left chest wall and the lump under my left arm...then we look at Ipi....geez...scar count is 27 and holding.....so thats the latest with me. love to all, Sharon in Reno Stage IV

To Thy Own Self Be True & Move Fast When You "Know" You Have To!!

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