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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joy_'s picture
Replies 9
Last reply 8/30/2010 - 12:01am

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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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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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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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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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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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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amybusby's picture
Replies 28
Last reply 4/23/2011 - 7:10pm

So far so good with the Temodar.  I've been on it for 2 or 3 days and so far no side effects.  I take it right before bed on an empty stomach (zofran as pre-med about half hour before!).

I've already done the simulation and stuff, so I am ready to start WBR on Mon. I'll do a 10 day course and then an MRI.

I've been around for a long time - fighting this for seven years.  I've seen so many of my friends and up in this position.  I'm not blind to the reality of what this means.  But I am also in pretty good spirits, knowing things could always be worse.  And knowing how many prayers, positive thoughts, and love are being sent out on my behalf - hard to feel sorry for yourself about anything when that's the case!

I'm so terribly worried about my friends Jerry and Knute.

Thanks for all the financial aid info on the Temador.  Luckily my insurance will be paying part of it, so it won't be as bad as I thought to get it.  See - lots to be thankful for!

I hate the idea that I may suffer some confusion & cognitive problems.  That's why I've always worried about having to do WBR/  As you all know I'm extremely proud of my razor sharp wit & intellect! *wink*  So here's hoping that's not too bad and my pretty little bald head doesn't get too burned!

Love,

Amy

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himynameiskevin's picture
Replies 13
Last reply 8/25/2010 - 10:13am

I was just told I have a met to brain as well has my lungs and liver. They swithched the plan of attack to radiation for three days on my brain. Followed by Interleukin 2 in about a week. I'm worried and seeking answers, to feel hopeful. So my question is, has Interleukin 2 ever worked? For anyone? Any success stories you may have heard of?

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Tracey FL's picture
Replies 1
Last reply 1/13/2012 - 8:28pm
Replies by: Theresa123

I am finally back on line with the new form of board.  Moms first treatment did not work so we are on to the new one PD-1.  Her last CT scan shows that things have doubled in size and number.  I cried for two days.   She seems so well but she has been stage lV since Feb.  Has anyone out there done the PD-1 trial? I would love to hear.

Tracey

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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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Knutes Pam's picture
Replies 7
Last reply 8/23/2010 - 11:51pm

Knutes brain bleed has stopped and he has been moved to a regular room for observation.  Speech comes and goes as does understanding of what he hears.  He wanted to know WHAT foreign language he was speaking-- since we couldn't understand him.  If I only knew the answer! It was english I'm pretty sure.  Still right side involvement.  As the blood moves a bit he can sometimes close his right hand if he is looking at it.  He can't do it at all if asked.

I'm hoping for more in the way of answers on Monday. 

Pam

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sharmon's picture
Replies 13
Last reply 6/22/2011 - 5:26am
Replies by: PeterS, Anonymous, triciad, Rocklove, King, Lori CO, sharmon, emilypen

Hi  An update on Brent,  He has been on the trial since Feb.  He is feeling good and is still working with a Local derm on antibiotics and creams to help with the really really bad rash.  The derm here in Bradenton Fl  was instrumental in producing a cream that is being tested in a trial in CA for inhibitors induced rash.  He is really looking better each day. 

Anyway overall 30 percent reduction and no new mets.  

The week before his scans and the week after the scans  we moved out of our house and into a motorhome.  We are going to travel for 2 months.  He was tired but it was doable for him.

We are Blessed.

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emilypen's picture
Replies 3
Last reply 8/23/2010 - 3:05pm
Replies by: emilypen, Terra, Lori CO

Hi All,

My husband is about to start a combo trial of BKM120 ( a P13K inhibitor) and GSK1120212 ( a MEK inhibitor). Just wondering if anybody on the board has taken either of these drugs separately? and if so what were the side effects and results?

Hubby is stage IV with bone mets and 1 soft tissue tumour, and about to start radiation for the bone mets pain this week.

thanks,

Emily

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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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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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