MPIP: Melanoma Patients Information Page

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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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Jenjen's picture
Replies 5
Last reply 8/23/2010 - 1:53pm

Hi all,

 

Just wanted to let you know I had my 3rd PET/CT last week and it went well. Still shows NED after a little over one year. I was diagnosed last July at age 26 with stage 3a melanoma on my foot. Currently in my 9 month of interferon injections and although it sucks..i am almost done ! Sending myself to Europe for a couple weeks come November to celebrate. I know one year NED is not much but i am trying to live my life like it will never come back ..even if i know there is a huge possiblility it will.

 

This entire experience actually made me want to change careers and now I am back in school to try and get into nursing school and I love it!!!!!  Praying for continued NED for myself and everyone on this board. And for those who are not at NED yet...praying you reach it with whatever treatment you are doing.

 

Jenjen 3a (san diego) 27 :)

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Sherron's picture
Replies 3
Last reply 8/23/2010 - 12:43pm
Replies by: Anonymous, Janner, Sherron

Jim's very enlarged lymph node (cervical) no treatment at all is feeling numb all arount part of it going up into the scalp and  up above the ear.   Does anyone know what this means.  Thank you.

 

Take Care

Sherron, wife to Jim

,

 

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Vermont_Donna's picture
Replies 6
Last reply 8/23/2010 - 12:25pm

Hi everyone,

  I just finished two days ago, 6 weeks of radiation treatments, 27 treatments each to  two different sections of my leg, thigh and lower calf, staggered so that the lower started one week after the upper, due to the wider excision not being healed. My skin on my thigh is red, sunburned looking and feeling and quite painful to touch...but I expected that, after having done 5.5 weeks of radiation to my knee area last year. My lower calf is not as red but the wider excision wound, which is still not healed up, but IS healing (its been since June 1st) remains QUITE painful, open, oozing lymph fluid still, and I change the bandages three times a day. I am doing twice weekly lymphadema treatments, although my leg is not nearly as swollen with lymphadema as it has been in the past after different treatments or leg infections. I am on round two of an antibiotic (had a slight cellulitis a month ago and just as a precaution nowas when I was finished with the antibiotics my leg really started throbbing in pain), and I am on vicodins for constant pain. Overall its not bad though, and I am managing...still working 5 to 7 hours a day......the vicodins take the pain down from a 5 or so to a 3......I do want to describe how EMOTIONAL I have felt this past week.....several reasons......leaving the daily treatments (so the feeling of ACTIVELY treating this beast) and sad about not seeing the staff, especially the doctor and the radiation techs who I knew from last year as well and have formed such a bond with. SO I knew that it was going to be hard as I neared the end of treatments, and it was!!! I have been teary the last two days. On my last day of daily treatment I stayed home in the morning and baked the staff a made from scratch two layer chocolate cake and brought that in with a card, with all their names on it (and those of you who have done radiation know this is quite a team who put together and do your radiation treatments)....there were hugs all around from everyone and I managed to keep it together while in the Cancer Center but did cry afterwards......needed to.....okay, well this is long winded, but just wanted to update how its going and what it was like for me to do radiation treatments. By the way, the surgeon (my oncology surgeon) has said it will take 2 to 3 MORE months for this leg wound to heal.......no swimming, no baths, no hottubs (wouldnt do that anyways with leg lymphadema and sanitation worries).......Donna, stage 3a, six leg re-occurences, post 11 months interferon, 7 months leukine, isolated limb perfusion, two rounds of radiation, and numerous wider excisionsover the last 4 years

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Sharyn's picture
Replies 7
Last reply 8/22/2010 - 9:05pm
Hi everyone,
I had my surgery on Thurs afternoon -- mastectomy and excision of 8 tumours from my leg. All went well, and Dr Pace was very pleased. He left only one tumour on my leg because it was so close to another excision, he wouldn't have had enough skin to stitch it up without pulling on the stitches of the other one. It's only a small one, so we'll get that and the one on my back another time. I was put in ICU only because there were no beds available on the surgical floor. There were a lot of machines running, whirring, beeping all night long, so sleeping soundly was near impossible. But Jim went out and bought me some earplugs, and that helped block the noise quite a bit.
 
I came home from hospital on Fri, and I've been pretty much out of it ever since, thanks to the Demerol every 4 hrs. I'm not in any pain, and I feel pretty good emotionally. It's amazing how much pain you learn to endure. I didn't realize how painful my breast was, but now that it's gone, this pain-free feeling is unbelievable! So although I miss Betty Boob, I like the painlessness even more.
 
The home care nurse comes by for daily dressing changes, but she said today that everything looks so good and clean, she'll only come every 2 days. I have 30+ staples from the mastectomy,  plus a load of stitches in my leg. All that gets removed 10 days post-op. I also still have a drain, but I have to wait until the drainage is less than 30ml/24hrs before it can be removed, which should be in a few days.
The day before I went in hospital, I got a call from Montreal to say the ipilimumab trial was now open. I explained what was going on with me, and she said that was fine. I just have to wait until I'm 28 days post-op, and I can start. So we're looking at around mid-Sept for Montreal.
Thank-you for all those prayers, well wishes and positive vibes.  Keep up all that positive energy. It's what keeps me going.
 
Hugs
Sharyn
Stage IV

 

WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial Mets to brain, lung and sub-qs. Craniotomy.

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I would appreciate a response from the lady whose husband has completed 3 rounds of IPI.  She had a reply to Nancy on 8/18/2010.

My Dr. has entered my name for a clinical trial for IPI.  He said they might not accept me or rule me out for some other reason.

And they kind pick canidates on the lottery system. I have had Melanoma for 4-5 year .For awhile it did not grow but has started again.

I have just finished 3 rounds of Termodar and it didn't do much good.  My problem is I am a 78 yr. old male with serious heart disease

so might not be able to tolerate IPI. I am curious as to your husbands age and his state of health before starting IPI. My Dr. said I may have

to make a decision within 2 weeks.  Hope to get a reply from you. You may email but I don't want to post my address on the forum. Thanks

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mrsmarilyn's picture
Replies 9
Last reply 8/22/2010 - 12:13am

Hello everyone - I havent been on here since the new format.  Not sure I like it!!!  Just wanted to check in with everyone and let you know that my brother - on GSK Braf inhibitor - still showing shrinkage - with no progression.  He has been on GSK Braf - ihibitor for about 7 months.   If anyone out there wants further information - please feel free to email me.  This has been a miracle drug so far - his stage IV melanoma was progressing fast.

Best wishes and stay hopeful.

Mrs.Marilyn

(sister of brother Gary stage IV)

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debbieVA's picture
Replies 14
Last reply 8/21/2010 - 10:09pm

 

 MPIP Family..... I just received a call from Pam...KURT suffered a cerebral bleed..STROKE Thursday. He had Right sided paralysis and has expressive aphasia, while he is able to speak, he can't find the right words to express himself. CT and MRI have been done which shows the bleed is extending. Pam has gotten a bit of sleep but sounded tired...and worried.

 

Please keep them in your prayers.

 

Debbie Stage 4 NED

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amybusby's picture
Replies 12
Last reply 8/21/2010 - 8:20pm

Now that my spinal fluid has been cleared up, my leptominingial mets are getting a bit worse (lining of my brain).  So Dr. Papa thinks I should do a 10 day course of WBR along with Temodar.  I was expecting that would probably be the results / recommendations.  Problem is how much of the T. cost is my insurance going to cover?  Hopefully I'll know tomorrow, but since I needed to start it tonight, we're already behind schedule.  Has anyone had any success with assistance?

I've heard it's not too bad but I'd like any advice / input on the WBR / T. treatment too!

Thanks,

Amy

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yensidw's picture
Replies 9
Last reply 8/21/2010 - 2:13pm

My best friend and the love of my life lost his battle with melanoma on August 3rd.  I don't know whether to say it was a 12 week battle or a 26 year battle.  He was diagnosed with superficial spreading melanoma on his chest in 1984.  He was treated at the Pigmented Lesion clinic at Penn.  They did a WLE, no SNB was done.  He continued to be followed there until 2008 when they told him he didn't need to come anymore, just see a dermatologist every year.  He never had another primary lesion and we thought everything was good.  Unfortunately in May he found a lump under his arm, and the CT scan showed lesions in lung, liver, brain and almost every bone in his body.  He never even had the chance to fight.  I am so sad and am looking for someone who can tell me how they got through this.  I feel like somehow I didn't do enough to help him.  I have asked my friends and family to donate in his memory to MRF in the hope that someday no one will have to face what we did.  Thank you for listening.

 

Janis

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Linda J's picture
Replies 3
Last reply 8/21/2010 - 11:43am

Has anyone had success with radiation before surgery?  The tumor on my butt/hip is fairly big (about the size of ping-pong ball) and has caused a lot of redness and swelling on the skin surface, so the idea so far is to do radiation to "sterilize" tissue around the tumor that may be impacted and to maybe shrink the tumor so that the surgery isn't as huge and also so that if there is any micro-involvement in the surrounding tissue, that is doesn't get pushed around and stuff with the reconstructive part of the surgery.  Does that make sense?  Or should I just ask to have the surgery and then radiation?  They will be radiating my groin as well as doing a LND to the groin area, but they were hoping to have both the groin surgery and the tumor removal done at the same time. 

The radiologist also said that the radiation will for sure hit my ovaries - I know this is a whole other issue, but would it be worth it to have eggs harvested before the radiation?? I'm 30. 

I am just totally completely freaked out because of the size of the tumor.  So far all my scans are clean, but when I go to bed at night all I think about is "how did this get so big" and "oh my god, this tumor is way bigger than my other reoccurances" .  I CAN NOT sleep because I am freaking out about how big this melanoma is.  I have never been so scared and so low.  I don't even know what to do this time to keep sane.

Has anyone had radiation first and then surgery and did that work for you? And has anyone else had a big tumor that they were able to beat?

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Lori C's picture
Replies 9
Last reply 8/21/2010 - 9:12am

In 9 days Will has his scan after two rounds of chemo.  He's feeling well at the moment - the pain meds have really made a difference and today he was doing just great.  He's continuing physical therapy and eating well.  We went out for coffee and he had two donuts so I was happy.

His visible skin lesions have all seemed to reduce, some pretty well, in size.  However, I'm getting almost paralyzed with fear anticipating the scans.  His sister is warning me to get hospice lined up (I do have info on that if he needs it but they can't do anything unless he stops treatment, according to the guidelines we were told).  

I'm trying to be optimistic but realistic.  On July 9, we were told his liver was badly compromised by the melanoma and it was acting aggressively based on comparisons with a scan done four weeks earlier.  It is unreasonable to think that if the cancer in his liver was still as aggressive he'd be at least a bit sicker than he was at that point by now?  Or am I engaging in wishful thinking?  He's less ill, from what I can tell, than he was six weeks ago, not more.  He even went into Chicago to visit someone on Monday using the train.

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himynameiskevin's picture
Replies 21
Last reply 8/20/2010 - 11:08pm

Hi. This is my first time posting. I am a 26 year old male living in San Diego. 3 years ago I had melanoma removed my back and was told all went successful. Got regular checkups and was told I am clear. This summer I developed a few cysts on my back in the same area. My Dermatologist did a biopsy and just over 3 weeks ago he told me my melanoma had metastisized. Stage IV. Long story short, my PET scan showed a tumor on my chest and back just under my skin, a tumor in my liver and a couple in my lungs. I had an MRI this morning and will get the results friday. My oncologist suggests I do chemotheropy followed by Ipilimumab. He also told me the grim outlook in all this, with not much hope. Gave me my sentence. I know the statistics and I accept that but I feel as long as I'm alive, breathing, and feeling ok, then anything is possible. And I want my doctors to feel the same. I know they have to look at statistics and such but with every person being so different, I don't see why they can't mention a possible positive outcome. Their outlooks are really affecting my outlook. My whole life I've had a positive, determined, and smart attitude towards any bad situation I've faced. But now, with the constant unfortunate news I keep getting, I find myself more and more worried.

So what I am seeking in this post, is anyone, who has experienced or heard of someone getting though an advanced stage melanoma. Please tell me your story. It's those stories that make me feel my best. They let me know that even if the odds are against me, I have a fighting chance.

Thank you.

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dian in spokane's picture
Replies 10
Last reply 8/20/2010 - 12:26pm

Well, I'm down in California today, and had my 4th injection of my Vaccine. Everything is going really smoothly. I took aleve at the same time I got my shot today and so far it's doing a pretty good job of stopping that BIG headache I usually get. The headache is coming on a little (it's on track timewise) but lacks the strength it has had on previous days.

So..only 4 more shots to go!

I'll be getting scans again toward the end of September, and hopefully I remain NED

Sitting in John Wayne Airport right now, headed to las vegas to join bob for a few days of fun before he starts his annual IRS course. I'll bet if I add it all up at the end of the year, it will turn out that I spent more time on the road than at home this year!

Hope everyone is having a great summer.

dian

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/19/2010 - 9:59pm

Anyone know how bone mets are detected??? Is there a scan for bone mets??? Which scans can pick up bone mets (ie:PET?CT?)

Thanks for taking the time to reply to my post.

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joy_'s picture
Replies 6
Last reply 8/19/2010 - 9:50pm
Replies by: babybluiz, Anonymous, bill58, washoegal, King, joy_

My husband is 6 weeks into recovery from LND of the groin.  He still can't completely straighten his leg.  He says it feels like his tendon is too short (pulls from behind his knee up to his groin).  Is this normal?  Has anyone else experienced this?  If so about how long until things were back to "normal."

He also says he has a "big section" of the front side of his leg where he feels nothing.  Permanent nerve damage?  Get better over time?

I guess we could wait until his recheck in a couple of weeks to ask the Dr but you all are so kind and helpful that I thought I would go ahead and ask here.

Thanks in advance for any and all responses.

Tracy

wife to Bill, stage IIIc

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