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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Nancy's picture
Replies 2
Last reply 9/6/2010 - 8:34pm

Buddy fell, went to ER and now is in a rehabilation center.  Scans done in the ER shows swelling in the brain.  They put him on 4mg of steroids around the clock.  He was scheduled for IPI last Tuesday (3rd treatment)  He was on the road to Philly, when they called to say he couldn't have the 3rd dose, as he was on high dose of steroids.  Dr. Sharfman said he should taper off the steroids very slowly.   Its the holiday weekend, so I assume on Tuesday, as he stated, Buddy's dosage will be 1 - 4mg in AM, 4mg in PM and 2mg at bedtime.  He has to be on 2 doses before he can continue with the IPI - His next treatment of IPI will be Sept 21 - if he can stay stable with a low dose steroids.  He cannot make up losing the 3rd dose.  It is amazing just how well he is doing on the steroids.  He went from not being able to sit up on a chair to now getting in wheelchair by himself, using the bathroom, can almost dress himself, gets a little unbalanced with ong pants, and pulling the long socks up...but he can work on that.  The rebah center now has him starting to use the walker, and trying the steps.  I get to take him to orchard for 4 hours a day, which he enjoys. 

Can you tell me how long can one stay on steroids?

If he goes off the steroids, will he most likely be so unbalanced as to fall again?

The doctor has said IPI was his only chance, so I fail to understand why he's not given the IPI even if he's on steroids as its a compassionate drug and hes already started on it..

Is there anyone I could contact except for the clinical nurse and the doctor at Philly to try to get IPI for Buddy?

Buddy did well on IPI, some fatigue, but that may also have been fatigue leftovers from the brain radiation and surgery..

Thanks everyone -

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ErikaHouston2's picture
Replies 1
Last reply 9/4/2010 - 11:31pm
Replies by: lhaley

High level summary - I am stage IA - Diagnosed in Oct '08 .65mm clark level II/III. I am 31 married with a 2 yo and a 4 month old.

Fast forward to late July 2010 - pass out, wake up to massive unexplained GI bleeding (no history whatsoever of issues), taken to ER in ambulance, admitted to ICU. Required blood transfusion (4 units).   Every test imagineable is run on me while staying in the hospital for four days (CT Scan, wireless capsule encoscopy, EGD, two (yes two!) colonoscopies, small bowel xray, and two nuclear imaging tests. Nothing is found to explain bleeding and no new bleeding so I am sent home with a watch and wait approach and told to follow up in a month with GI Dr. that followed me in hospital.  

Have all my records from hospital stay sent over to MD Anderson where I am followed. My Dermatologist at MDA discusses case with Melanoma Oncologist who recommends PET CT scan.

I have PET CT scan 35 days after initial GI bleeding.

Impression from PET CT is:

1. No definite evidence of melanoma metastases.
2. There is uptake seen within the loops of small bowel in the pelvis which could be due to recent history of GI bleeding. This can be followed on subsequent exams.

The Melanoma oncologist recommended doing another PET CT in one month.

Any thoughts on the impression? Should I be worried?

Unfortunately since my main Dr. at MDA is a Dermatologist she is playing the messenger and I feel like I am really in limbo and not getting a good read on if they are just being extremely cautious or if this is something I should be more concerned about.

 

 

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Kevin from Atlanta's picture
Replies 5
Last reply 9/5/2010 - 11:03pm

Next week I get my scans after doing four treatments of Ipi.

If someone is severly allergic to leukine, who they be able to do IL-2?

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Sharyn's picture
Replies 6
Last reply 9/6/2010 - 8:44pm

Hi Ipi patients

I will be starting Ipi in a couple of weeks. Just wondering whether side effects are immediate, or do they show up after a week, month? I'm asking because Jim and I are considering a little vacation after I start Ipi, but if I'm going to be sick, we'll forego those plans. Thanks. BTW, I got my staples, stitches and drain out from the mastectomy, and I'm doing really well! I even have a temporary "falsey" to use until I get my prosthetic breast in 4 more weeks. At least it's better than the 4 pairs of socks I had stuffed into my bra! LOL!!!

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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AndyD's picture
Replies 7
Last reply 9/6/2010 - 6:49am

I've had 4 ipi treatments now and I feel so tired like gravity is 10x stronger than it should be. =] Is it this the cancer, the ipi, or my glands out of whack making me tired? If you're on ipi, do you feel way more tired than normal? Will I have normal energy levels in the future?

hope to hear your thoughts

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Jill and Eric in Fl's picture
Replies 7
Last reply 9/7/2010 - 9:25pm

Hi sorry I haven't posted in awhile, Eric received 2 doses of Ipi and was itchy and running a fever 10 days after the first dose, after the second dose he was still itchy and the fever came and he had lots of aches and pains, he said his bones hurt like they did after he got the Neupogen(sp?) shot after chemo, I took all these as good signs that he was having an immune response, every time we talked with Dr Weber at Moffitt about these side effects he said it sounds like its from the medicine and not to worry about it. Then on Aug 23rd, 12 days after his 2nd dose, he woke up in the middle of the night in extreme pain, it was so bad he couldn't move and he had a panic attack, so we called the ambulance and he went to the ER. We live over 2 hours from Moffitt so we went to our local hospital where Eric had received treatment before being transferred to Dr Weber at Moffitt. Eric was having lots of gas and bloating and only one episode of diarrhea and then he got constipated from the Imodium. His belly gurgles and rumbles so loud it would wake me up at night. Eric kept saying if he could get rid of the gas and full feeling he thought the pain would go away .The ER did a  full work up, xrays and a ct scan and could not find a reason for the pain, morphine took the pain away and after several hours they sent us home (with no pain meds). They said the lesions in his liver had gotten larger but they were comparing it a scan in May before he was transferred to Moffitt so I wasn't concerned and figured the progression occurred before starting IPI, well after a week of pain and not much relief we were back at the ER on Sun, Dr Weber suggested we start him on oxycodone so home we went again. Eric was scheduled to get his 3rd dose this past Wed. The oxycodone wasn't helping with the pain and he was still unable to move very well, Dr Weber looked at him and admitted him to the hosp. Dr Weber was headed out of town for a conference but he said at least 3 times during the visit Eric didn't need another CT scan, he said he believes it is the liver tumor hitting some nerves and causing such pain and he would have the "pain team" here at Moffitt get the pain under control and he would see him in 3 weeks for a final dose of IPI. He explained that he couldn't get the 3rd dose so he had to skip it but the 4th dose would be in 3 weeks. He said the pain was either tumor destruction (he said that 3 times), tumor progression but a ct wouldn't be able to tell the 2 apart. Anyway we were admitted Wed morning and they set up a morphine pump and Eric's pain level was still 7 or 8 on a scale of 10, the docs decided to do a ct to rule out possible causes even though I told him he just had one 9 days earlier, they ran all kinds of blood tests to find out what caused his temp to rise even though I told them it was probably from the IPI. What upset me was Eric has not eaten in days and after 24 hours in the hosp they hadn't done anything to help the pain, the morphine was no longer working. What set me off was when the intern doc came in after 24 hours and said the attending MIGHT stop in to see him tomorrow, I had to get a little ugly and ask where this pain team was and why were they not helping my husband. The intern doc said the ct didn't show anything except that his liver tumors had grown by a cm or two and the other in his spleen had gotten bigger too, they say his colon has no colitis or inflammation isn't isn't blocked in any way. They said Eric could try to eat solid food, he was so hungry at this point, I got him a yogurt and as soon as he finished his pain level went from a 5 all the way to a 10, he started sweating, got really cold and he was shaking so bad from the pain the whole bed was moving. The nurse saw all this happen yet when she asked the doc to give him more morphine he said no. Well I lost it,I got everyone I could think of involved and within 10 mins the pain team showed up. They explained that he was opium resistant and the morphine isn't working well, anyway they got his morphine level raised and he was back down to a pain level of 5 or 6 and they were going to come up with a plan. I asked the docs if the plan was to just keep him comfortable until he passes away and they were shocked I asked that, they said his bloodwork was all good his LDH  was high but not too bad. I just cant see how I will ever be able to take him home if he is on a morphine pump. Meanwhile his belly still makes these awful sounds and he says the gas makes him feel so full. Anyway to make a longer story a little shorter, the emailed Dr Weber in Belgium and sent him the ct results and Dr Weber, emailed back and said he was taking him off IPI and he would see us when he got back in town to go other other options we might have. Well the attending doc came in this morning and basically said"we are sorry you have progression of disease, Dr Weber is taking you off IPI and there is nothing more we can do" The pain team recommended steroids and they gave him his first dose and he said he felt better, he got his second dose this afternoon and when I got back in town he was sitting up in a chair he was smiling, talking, laughing, almost his old self. My gut feeling is that while the liver tumors  may be hitting a nerve he was having some sort of gastrointestinal issue that the steroids has helped clear up, I still feel like he was having a response to the IPI, he had so many side effects and his eyebrows which we light in color are much  lighter now with a few white hairs but the hair on his head hasn't changed. I just don't understand why he cant get the last dose of IPI and give it a chance to work and why if they know IPI causes tumors to get bigger before shrinking, why he would be taken off. Dr Weber says that if it is tumor destruction it can hurt and he sent us to the hosp for pain management and now we are off the trial, I am confused. Does anyone know if there is a clause in the compassionate use trial that says if they show progression during the 12 weeks that they have to be taken off? Dr Weber acted like he didn't want a ct because he was afraid the tumors would look bigger and maybe he knew that would remove him from the trial, I don't know I am just guessing. Sorry this is so long, I am in a hotel room away from my kids and I am emotionally and physically exhausted. I went home today to work (we own our own business and I can't afford to get behind)and get clothes, we were here 2 days with no extra clothes or anything, my mom stayed with Eric but we can't afford to keep staying in a hotel for too much longer so I think I will send my mom home tomorrow and sleep in the hosp with Eric, ugghhh I am tired here are my questions:

What after IPI? He has a brain met, had radiosurgery and it shows no electrical activity and is shrinking so we assume its dead but I read all these trials say no brain mets. Dr Weber has mentioned BRAF in the past but we haven't been tested for that, what other options are there?

Am I wrong in thinking that maybe just maybe the tumors appear larger on the CT is because the IPI is working and they are "progressing" before they shrink?

Is there anything that stands out to you guys that I or the docs aren't thinking of? I find it amazing that on morphine alone his pain level was still a 5 but now after 2 doses of steroids its a 1 or 2, doesn't sound just like tumor pressing on nerves to me, what else might it be? I have said all along its kinda like colic but the docs didn't buy into that

Wow sorry this is so long, Dr Weber will be back in the country on Sun but considering Mon is a holiday I probably won't see him until later in the week and in the mean time my mind is just spinning. Oh and another thing that kept making me mad was the attending doc, the head lady of the team, kept calling IPI, chemo and was trying to explain that with all chemo there are side effects and this chemo only has a 4% response rate, it just goes to show that even the docs in the same hosp don't know what is going on. Eric kept trying to correct her and explain to her that IPI is an immunotherapy but she still kept calling it chemo, come on Dr Weber get home soon so we can get some answers!!!

Thanks

Jill

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KatyWI's picture
Replies 3
Last reply 9/4/2010 - 9:36pm
Replies by: King, KatyWI, Eileen L

So my 3-month PET wasn't exactly what I wanted - there are three small (4-5 mm), low-SUV (1-2) nodules in various places in my butt.  Could be nothing (e.g., cysts), but with MM...nothing's ever "nothing."  The nurse mentioned one possible outcome would be to have a surgeon remove them.  My doctor's appointment isn't until Thursday, but of course I want to go in armed with as much info as possible.  So here's the question:  two of the nodules are too deep to feel (one is 1 cm beneath the skin, and another is deeper still).  I can't feel these two.  How would a surgeon even find them to take out?  And what exactly would the surgeon take out?  My two previous subQs have been near the skin surface on my back and they were removed in a procedure analagous to a WLE, including an ellipse of surface skin.  That doesn't make sense to me for the deeper ones.

Anybody have experience?  How is surgery handled for deep, small lesions?

KatyWI, Stage IV, maybe still NED 4 months, or maybe not.

Just keep going!

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/4/2010 - 11:41pm
Replies by: rj, Anonymous

I just had blood work done by my primary care doctor and it showed lymphocites low creatinine high,along with several other things that were flagged. I was at my oncologist and had blood work done about a month ago where nothing showed up abnormal.  I'm scheduled to go to a nephrologist, have an ultrasound done and some more lab work, so my primary care doctor clearly thinks we need further checking. Might this be something to do with melanoma, or am I looking at something entirely different?  I'm in good health otherwise.

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Keri W's picture
Replies 10
Last reply 9/4/2010 - 9:20pm

I am trying to get information regarding the IL2 treatment.  My brother was referred to Duke University for the IL2 treatment.  From the infomration I have read, the treatment is grueling, but the effects are temporary.  I live in Louisiana and I am trying to decide if he will need someone with him as he undergoes the treatment.  I would love to hear from anyone who has undergone this treatment, so I will have a better idea of what to expect. 

If God brings you to it., he will get you through it.

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Maybe this has already been discussed in the past, but I thought I would share this information with the group because I had been under the impression that with a melanoma diagnosis that life insurance was out of the question, except at a much higher rate.  One of my friends told me that when she and her husband were getting it, that melanoma was specifically listed as automatically disqualifying you.

Well, my husband and I already had some life insurance but felt we needed to get more.  I told my husband that I didn't want to bother with it for me because I wasn't going to get it (and if so, it would be extremely expensive).  He insisted.  So we applied through The Hartford.  I was a little more encouraged about the possibility of getting accepted, as from what I read in an article I found on the Internet, they were one of the few carriers that gave policies to people with a cancer diagnosis. 

Wow, what a surprise I had when the agent called and advised me that I'm getting the "preferred" rate, the same as my husband (who has perfect health).  Even the agent was a little surprised, but he'd never had any experience with an applicant with a melanoma diagnosis.

He did tell me, though, that if I had had an SNB, that I would have automatically been ruled out from getting insurance, and I know that sometimes people (albeit few) in their panic with the diagnosis, when their Breslow depth doesn't really warrant it, still get one, and unfortunately, these are the kind of things one learns after the fact, but something I would definitely mention to someone to think about.

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Fen's picture
Replies 7
Last reply 9/6/2010 - 11:20pm

 A couple days ago there was a big red warning box at the BB.  Said something about information being compromised and I had to log in again.  I did that but now every time I leave the board and come back I have to log in again.  I click the "keep me logged in" box, but it doesn't help.  Anybody know what I'm doing wrong or what is happening?  

thanks

fen

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Anonymous's picture
Anonymous
Replies 0

Has anyone heard from JanOC. Worried about her husband.

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Cautare dupa tagul Paunesti CANCAN

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renter9's picture
Replies 2
Last reply 9/6/2010 - 10:51pm
Replies by: KatyWI, Charlie S

My friend had a primary Melanoma removed 1 year ago, had node involvment, now had 2 small bb size areas removed near her original site and the surgeon reported them as transient and wants to remove to get clear margins which may invovle a skin flap for a graft.

Thanks, Rita

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Aileen's picture
Replies 4
Last reply 11/19/2011 - 9:37pm
Replies by: Anonymous, SuzannefromCA, Bugandi

A gentleman in California was diagnosed this summer with ocular melanoma.  Is there another O.M. patient who has survived surgery and radiation who could offer some supportive tips, recommendations on coping and getting through the treatments?

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