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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Maureen038's picture
Replies 28
Last reply 9/12/2013 - 3:35am

I love the new web site! Excellent job Tim and to all the other people involved in the changes.

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bj63's picture
Replies 7
Last reply 9/12/2013 - 3:08am
Replies by: JerryfromFauq, bj63, Anonymous, POW

This is a great summary of the latest drug therapies for the treatment of Advanced Melanoma (both FDA approved and investigational).  I found it really helpful and I thought I'd share.

http://www.onclive.com/publications/obtn/2013/August-2013/Novel-Agents-Revolutionize-Melanoma-Treatment

bj63

Sometimes no news is the best news!

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JerryfromFauq's picture
Replies 7
Last reply 9/11/2013 - 9:45pm

Had my Scans yesterday. Still have the (approximately Innumerable) lung tumors at the same sizes and locations they have been at. Have a sore neck, told Onc that I thought a good massage would help this, that I didn't suspect it to be from my Mel. He felt the area and agreed (No nodes enlarging.) Reported a darking lump on the inside of my right shin. Three weeks ago it was large and sore. I waited to see if it would go away. I delayed reporting it to the Once since I had an appointment in three weeks. Figured would see what happened to determine if I should ask, before the appointment, for the scan to cover my leg. It has gone down much in size, is harder and has gotten darker. So waited to see the Onc first. My logic is that I suspect that It is a place I banged hard, (without knowing it at the time???) The Onc checked it and said they could do an FNA if it doesn't continue going down. For me to keep him informed. Fine with me, it's my decision as to what and when he will do what. (Cops pulled me over on the way home that night for a headlight that went out. Hopefully won't bang my leg while working on the car today!!)

I'm me, not a statistic. Praying to not be one for years yet.

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JoshF's picture
Replies 9
Last reply 9/11/2013 - 7:30pm
Replies by: JoshF, Tina D, BrianP, NYKaren, aldakota22, Anonymous, JerryfromFauq

Received call on results of MRI today. Actually showed 2 lesions in cheek. According to Doc, Radiologist said it shows benign characteristics. I asked him what he felt and he said given history, it's a 50/50 chance of being melanoma. He also said it could be lymph node or scar tissue. So not having a definitive...they are going to do surgery to remove & biopsy. Obviously results will dictate next steps. I can't stop my head from spinning. Think I'm in trouble here.

Let's work for better treatments....for a cure!!!!

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/11/2013 - 7:06pm
Replies by: Anonymous

I have not seen any posts in quite awhile? How is she?

Charlie need not respond....

This information is for general patient educational & information purposes only. It should not be used for diagnosing/treating a health problem or disease. If you have or suspect you may have a health problem, you should consult your healthcare provider.

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bkinman's picture
Replies 3
Last reply 9/11/2013 - 12:54pm
Replies by: NYKaren, bkinman

I have been having headache's since starting the Tafinlar. I know it is a side effect. Aanyone else experiece, and if so, what did you take/do to help? Changed me from Zelboraf to Tafinlar due to less toxicity, but I would rather have the joint pain (had gotten to where it was minimal)  that only hurts when I move and diarrhea than a constant headache. Ibuprofin and/or Lortab doesn't seem to help. Dr didn't offer anything and we were too busy talking about scans and pains in sides and back for me to remember to push him on it. This is my local oncologist who I seem to have to drive, not my Mel specialist. in TX 

 

Thanks,

Becky

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nancyg's picture
Replies 10
Last reply 9/10/2013 - 9:18pm

My husband did ILl-2, 14 doses... Has tumors in
Lymph nodes in chest and a mass on lung-- went for
His CT scan today-all of the tumors grew, but
there are not any new ones anywhere else ..that they could see on the
Scan.... Now waiting to see if he has NRAS mutation
For a clinical trial... Also trying to get insurance to
Approve Ipi... So disappointed and frustrated...does anyone
Know the percentage of people that ipi helps??
For IL-2 it was 20%
Thank you so much,
Nancy

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Janet Lee's picture
Replies 8
Last reply 9/10/2013 - 9:15pm

My husband, Don, began Ipi treatments on May 20th, after Zelboraf worked for only 2-3 months. The scans Don had this week show definite improvement, and Dr. Flaherty at Mass General said there is no doubt that Don is having a positive response to the immunotherapy. He is so happy with Don’s progress, that we don’t have another appointment for at least eight weeks!

Needless to say, we both shed a few tears in that doctor’s office yesterday – tears of joy and happiness, tears of relief. Dr. Flaherty was beaming, and his nurse practitioner came in to give us both hugs. We both recounted how the first oncologist who gave us Don’s diagnosis in January told us there was nothing that could be done and he had maybe three months…. (that was the last time we saw that guy!).

Dr. Flaherty felt the prognosis at this point is positive, but we must remain vigilant with blood tests and scans and MRI’s and see how things go over the next few months. Truthfully, I'm afraid to "relax," although I do intend to enjoy the next several weeks. I would love to hear about any experiences with Ipi showing success, and what comes next? 

In the meantime, Don and I hosted a beautifully romantic wedding for our daughter, Georgi, on August 31st. And yes, Don did get to dance with his daughter! Our attention now transfers to eldest daughter, Tori, who is pregnant with our first grandchild -- a GIRL! -- due 12/31/2013. Don and I can't wait for this, but we will while away our time in Florida for a bit before returning to central Mass for the holidays and baby's arrival.

Heartfelt appreciation to all of you who share this war on melanoma with us.

Janet Lee

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/10/2013 - 1:50pm
Replies by: JerryfromFauq, Tim--MRF

Just curious if the PatNet histories are still out there on the new site?

Luke 1:37

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Tim--MRF's picture
Replies 6
Last reply 9/10/2013 - 1:40pm
Replies by: bj63, nancyg, Anonymous, BrianP, JerryfromFauq

All,

As I mentioned last week, the MRF’s website is about to experience an impressive transformation. The new look and feel of the site will launch on Monday, September 9 – just 3 days away!

One of our top priorities is to make sure MPIP and other community resources are preserved. In order to do this, we will be migrating all of the existing discussions, threads and active user profiles over to the new site. We are working with an extremely qualified partner to do this and we don’t anticipate this impacting you or the MPIP forum. However, just in case, we suggest you avoid posting in the forum from 4 a.m. to 12 p.m. EDT on Monday, September 9. During this window, we will be transferring all the above mentioned content. If you do post during this period, we recommend you make a copy in case there are any hiccups in the migration.

Not only will you see a vast improvement in the navigation and look and feel of www.melanoma.org, but you’ll also see your posts on this forum appearing faster.

We look forward to hearing your thoughts on the new site!

Tim - MRF 

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Owl's picture
Replies 4
Last reply 9/10/2013 - 1:30pm
Replies by: bj63, joycedixon, Owl, Tina D

Hello,

I have a question about Zelboraf and pain as a side effect. My husband is taking Z for more than 8 months, 2x3 pills. He's always had manageable side effects. For some weeks now he is complaining about more and more pain (joint pain, skin pain as soon as he slightly bumps into something, shoulder pain) and weakness in his muscles. He has tried several pain reliefs but nothing really helped he said. He has also been checked about possible bone mets, luckily nothing was found. I am searching now for something that can help him. He doesn't sleep properly and the pain makes him more and more kind of depressive. Does anyone have experiences with alternative pain relief, accupuncture or anything else? Is it worth trying or should he ask for stronger pain relief medication?

The situation at the moment is getting more and more difficult as his constitution is influencing our whole family life. We are so happy that he is such a good responder on Z but currently we can not enjoy it.

Thank you,

Jenny

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42-year old male. Stage IIIC, pT4b, pN2b, Mx.

Otherwise healthy and energetic.  No symptons or signs of illness. 

 

Eight weeks ago, I went to the doctor expecting to get a prescription for penicillin for an infection on my right foot and was eventually diagnosed with Stage IIIc melanoma in the bottom of my foot.  After several several MRIs, CAT scans, and a PET scan, it was determined that the melanoma did not spread to my liver, lungs, or other major organs.

11 days ago, I received a Transmetatarsal amputation (TMA) on my right foot.  At the same time, I received a Sentinel Node Biopsy (SNB) on my right groin.  I just learned that 3 of 5 nodes were positive. 

Yesterday, the doctor recommended that I get a groin dissection on my right thigh.  Once this is completed, then he would recommend me for a trial study, probably interferon.  

HERE IS MY QUESTION

I would like to hear from others with melanoma who have had positive SNBs.  Does everyone simply then progress to having the groin dissection?  I am crazy to not get the groin dissection?  I am crazy to not want to move forward with the trial with interferon?  What other options are out there?

It has literally been less than 24 hours for me to process this information so I am still in that manic decision state.  I am scheduled for the groin dissection on Sept 11th but am seriously considering not having this operation.  My foot is still healing from the TMA.  My inner thigh is still healing from the SNB.  Other than these surgeries, I have high energy levels and zero symptons of sickness.  From what I have read and been told, the groin dissection does not necessarily guarantee anything, other than lymphoedema and a longer physical recovery.  And I don't have to explain interferon to this group. 

I would truly appreciate any and all comments about your thoughts on my situation. 

Thank you very much,

Matt

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JustOnceCubbies's picture
Replies 8
Last reply 9/9/2013 - 1:42pm
Replies by: JustOnceCubbies, Anonymous

Hello everyone.   I was diagnosed 5 years ago with melanoma, and stayed at Stage 1 for 4 years, with treatment of Intron A just after my initial surgery.     Four years later I jumped to Stage III after a reoccurance in a lymph node.    Another round of surgeries and this time treatment with Sylatron.   I'm 19 months into weekly injections with Sylatron, and fighting the good fight.   My question is this.......does anyone know where I can find the statistical benefits of Sylatron during the maintenance period?    I know when we looked at the Interferon, something along the lines of 75% of the benefit was realized during that first month or two of HEAVY dosage.   So stopping after 8 months because of the side effects was something we could live with, because the statistical analysis pointed towards that.   Does anyone know where I can find a numbers breakdown on Sylatron like that?

 

Thanks in advance for any suggestions or help!

Mike

Frisco, TX

thepeters4.blogspot.com

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Anonymous's picture
Anonymous
Replies 6
Last reply 9/8/2013 - 3:58pm
Becky C.'s picture
Replies 3
Last reply 9/8/2013 - 2:48am
Replies by: tasjacques, Bubbles, BrianP

Hi. I wanted to ask any patients that are on anti-pd1 if it made you sick soon after receiving treatment I have been getting sick on day two. Doctors seem really surprised by it. I appreciate any feedback.

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