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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Janis B.'s picture
Replies 4
Last reply 6/17/2011 - 8:32pm
Replies by: Janis B., nicoli, MichaelFL

I had my second Oncovex injection a week and a half ago.  Now experiencing hair loss.  Anyone know anything about this?  It's not listed as a side effect, but then, it's a trial drug, so who knows.  Thanks for any and all feedback (including sympathy - 2nd go-around for hair loss :-)

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aynw's picture
Replies 13
Last reply 6/17/2011 - 8:26am

Hello.  I live in Manitoba, Canada and was recently diagnosed as Stage IIIA.  The oncologist advised that in my province the options are to do the 1 year of interferon alfa 2b, or observation. There are no other treatments or clinical trials that I qualify for here. I know there is controversy regarding efficacy of i/f - I am wondering if any of you could provide advice / feedback based on your own experiences.  I am 41 with 2 daughters at home and want to treat this as aggressively as possible...so interferon, observation or is there something else out there that is considered more effective?

I know in the end it is a personal decision my husband and I will have to make, but your feedback will be helpful. 

Take care,

Ayn  

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gabsound's picture
Replies 2
Last reply 6/16/2011 - 4:32pm

Thanks a lot, for the replies to last post. My gut feeling is these lumps are not good. My surgeon did mention fat necrosis as an option. He also said just due to surgery you can get fluid collections e.g. I didn't mention that I also did an ultrasound on myself (I'm a sonographer- I've mostly done gyn and obstetrics for last 20 years). Not that this is my area of expertise, but if I saw something like these near a woman's ovaries, I'd say "they better take that out- could be cancer". I showed images to both dr's as well. Also one of these lesions increased a cm in each direction in 1 week.

I appreciate your support. Still waiting for docs to talk, and to get call re: surgery scheduling. My sister had bx on her "good" breast. She has to wait a week to see her surgeon. Hopefully she will see oncologist as well. I felt the lump myself recently. It's huge! Hope it hasn't spread far.

I had my re excision yesterday. At least 3 inches for small lesion. Path report just said melanoma in situ-no depth or other info. Also saw cardiologist due to chest pain. He's convinced it's all stress and prob some GI issues, so will take Prilosec. Finally, somebody said I'm ok. Yeah- prob not going to have a heart attack soon :)

I'll update w any news.

Julie

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Vermont_Donna's picture
Replies 20
Last reply 6/16/2011 - 3:52pm

Hello MPIP family,

King posted under a different thread about our friend Sharyn, but I thought I would start a separate thread for Sharyn. With tear streaming down my face, I just read about her passing today. Sharyn and I developed a special friendship, and exchanged many emails. Someday we planned to meet in Montreal with Val, and have some fun times. I HATE this damn disease!!! Sharyn, my friend I will miss you so much, you are in my heart forever. My sympathy to your loving family and friends.

Vermont_Donna

ps I was unable to cut and past the family email and obit because I am an idiot with computers but you will find it under the question about Sharyn and Val, and King kindly posted it

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shirlwhiting's picture
Replies 1
Last reply 6/16/2011 - 1:37pm
Replies by: Anonymous

My grandson (stage III - unknown primary) is losing weight for no apparent reason.  About 10-13 pounds.  He says he feels ok.  Has anyone lost weight as the first symptom of a recurrence of melonoma.

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nickmac56's picture
Replies 1
Last reply 6/16/2011 - 10:59am
Replies by: Becky

As I posted last week, my wife ended up having grand mal seizures due to Cyberknife radiation treatment on the area of her brain where she had her craniotomy to remove the two melanoma tumors which bled. The irritation of the brain and insufficient post radiation anti-seizure medication caused the seizures. She spent 5 days in the ICU while they ran continuous EEG monitors and did CR scans and MRIs. Fortunately there was no sign of other tumors, just the readily identifiable irritation around the original tumor site. 

She is now home and on a fistful of daily medication. But the medication should all come with better warning labels - so if you are ever on the following, be prepared for a variety of side effects:

Decadron or dexamethasome is the steroid. It's an anti-inflammatory - which she was on post radiation but on insufficient dose. Causes mood swings, fuzzy thinking, loss of memory and confusion.

The anti-seizure meds are Kepra, Dilantin, and Lacosomide. They also cause her great confusion, anxiety, make her highly emotional (she is crying a lot) and a bit unsteady.

In talking to one of the neurologists on weekend duty at the ICU who is originally from Eastern Europe - he said that it was pretty common knowledge over there about the side efects of Cyberknife and that they treated far more aggressively the potenital for seizures by prescribing in advance the sterioids and antiseizure meds in suficient doses. So it's a bit of a trade-off - you get guaranteed side effects from these powerful drugs, but at least you probably aren't going to have a seizure and end up in ICU.

She will be weaned off the steroids in the next week or so and that should help. Her attending neurologist says she will get more used to the Kepra (the anti-siezure med of choice because it doesn't go through the kidneys), which is a good thing as she is likely going to be on Kepra for the rest of her life, hopefully on a reduced dose. In the meantime she can't be left alone.

We won't know untl our oncologist visit next week as to how many more weeks this pushes back her next systemic treatment while her brain calms down.

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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dawn dion's picture
Replies 16
Last reply 6/16/2011 - 9:25am

Okay folks here we go again - I am off to Moffitt on Thursday for my second set of scans since beginning the ride on the BRAF/MEK  train.   I thought I had this under control this time around but  the closer Thursday gets the more I am once again ready to puke.   I don't know which is worse - Melanoma or Scans.

To all of my friends out there on the train with me, I know that some of you are in the same boat with me this week and I am sending out lots of positive vibes and tons of cyber hugs for all the best.

Hugs and Smiles to you all

Dawn

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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shellebrownies's picture
Replies 11
Last reply 6/16/2011 - 2:51am

Good morning everyone!

If you've been following along with our story, then you'd know that he didn't end up qualifying for the BRAF/MEK trial and he was instead offered Chemo as a hopeful stopgap. Dr. Lawrence was clear in that it wasn't a high chance it would work effectively (25-30% chance, basically), but with how aggressively Don's cancer was spreading, other options like Ipi were not viable.The hope was that the chemo would work enough to bring Don's liver functions back into a more stable place so that he might qualify for a compassionate use PLX trial that was opening soon.

Don had his first treatment (carboplatin and paxiltaxel) on May 29th. After a tough couple weeks (he ended up getting a staph infection and spent another week in the hospital), Don went for his follow up visit with Dr. Lawrence on Monday.

He asked Don how he was feeling: better, worse, or the same. Don said about the same (keep in mind that the Vancomycin he is still taking for the Staph infection makes Don vomit at least twice a day). I mentioned to Dr. L that it seemed to me that the tumor under Don's arm had shrunk some (it actually had been bulging out of his armpit making it so Don couldn't put his arm down to his side completely). He asked Don if he thought that also and Don said yes, because he could bring his arm all the way down to his side again.

Dr. Lawrence took a good look under his arm and palpitated the area well. He was shocked and amazed at what he found. He told us that the response that Don had was something he would have expected if he were on the BRAF trial, but never expected to see after chemo. He said that the underarm tumor used to feel like a softball; now it felt like a couple of marbles.

His liver numbers, we later discovered, had a similar transformation. Don's LDH level on the morning of 5/30 (a few hours after receiving the Chemo) was 2375. The LDH level from Monday's blood draw was 539.

Based on the level of Don's response, rather than put him into the Compassionate Use trial as planned, Dr. Lawrence wants to continue Don on the Chemo for as long as it seems effective. This will be judged treatment by treatment, with the knowledge that the BRAF drugs are still there as a resource if needed.

It also seems promising that the pain medicine levels that were working well for Don when he left MGH post-chemo treatment are too high for him now. His pain management doctor (who we also saw on Monday) agreed that they should be lowered and is bringing the Methadone dose down from 10mg 3xday to 7.5mg 3xday. Even after switching this on Monday, Don hasn't had to use his breakthrough meds since Sunday.

We are stunned and thrilled that we finally have made some headway against this beast. Still, I have to admit that I am having a hard time switching gears; I still am afraid to have too much hope. Please help me believe. 

Thanks to you all, and please, keep Don and I in your prayers...it finally seems to be working! smiley

 

Michelle, wife of Don

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JerryfromFauq's picture
Replies 9
Last reply 6/15/2011 - 11:56pm

After feeling/finding an approximate 2 cm lump in  my right breast on the 6h, I had my schedluded 6 month scan on Monday the 13th.  The Medical Oncologist is meeting with my Oncological surgeon to schedule a biopsy. 

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

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nickmac56's picture
Replies 5
Last reply 6/15/2011 - 4:20pm

My wife Meagan, who just had two deep skin tumors surgically removed on Monday, had a big set back. On Wednesday she had four seizures. Ended up in emergency room and ICU. She is still here, and we will be here through Monday. For those of you who have brain mets, or have been treated with brain radiation, or who think you might get brain mets, read on.

She had an initial CT scan which revealed no tumors large enough to identify at the CT resolution. She underwent continuous EEG monitoring and the neurologists discovered she had two things going on. Despite heavy doses of steroids and anti-seizure medication she is having continual sub-clinical seizures (no outward physical manifestation) which affect her mood and aren't good generally. So they are boosting the med cocktail to try to control this. Because we don't want to go the super aggressive route which is induced coma and different meds and intubation. The other thing they discovered through the EEG is the subclinical seizure activity is coming from the right side of her brain, which is not the site of her previous two tumors, brain surgery and Cyberknife treatment. So the suspicion is the brain irritation which triggered the seizures was not from the previous site but thus new zone. She had an MRI late last night and we expect results today. Probably another tumor or two which will need to be addressed.

While they can be Cyberknifed the issue is it sets us back again another 2-3 weeks before she can do IL-2. Once it gets to the brain it just is damn difficult even though you can zap those brain mets over and over, your body is left untreated. She doesn't even want a body CT scan at this point to know what else is happening beyond the known lung tumors.

The lesson I learned in all this is to call 911 if your melanoma person exhibits any strange behavior. In our case my wife was on the phone and suddenly lost the ability to talk or recognize her boys or me, who were both there. We called our Cyberknife radiation oncologist right away thinking it was some side effect from her recent treatment. They said no, get her to ER. We live pretty close to our oncologists hospital and ER so we put her in the car and I drive like a nay out of hell to get her there. But within two blocks of the ER she had a grand mal seizure. I had her there in another two minutes and the emergency team had her on the table to handle her next two grand mal seizures before all the medications kicked in and she was out. But apparently all our city 911 response vehicles have anti-seizure meds on board and could have administered it and she would have been strapped in to a gurney even though at the time we left home she was calm, quiet and seemed to understand what we wanted her to do. In our case I was just lucky. I was able to control her grand mal seizure in the car we were so close to the ER that she got medicated quickly. But I was admonished to next time call 911.

So we wait for results and spend another week in the ICU. I really hate these recliners they call beds for the overnight stays for the caregivers. Not much sleep.

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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gabsound's picture
Replies 7
Last reply 6/15/2011 - 2:13pm

Hi,

I could use some advice. Noticed a lump came up next to my lymph node dissection scar at the bottom on my thigh. There is also another in the groin. I had a Pet/CT last week and it came back with comments about some reactivity most likely due to surgery and that there is a new mass in the groin 2.2 x 2.3 cm, a 1.3 cm rounded low attenuation lesion in the right adductor longus muscle as well as 0.6 cm nodule inferior to this and a 5mm subcutaneous modularity in the incision at the knee (site of melanoma #1).

On the Pet scan the groin mass has an SUV of 2.8, the second lesion on PET only measures 6mm and has an SUV of 1.6. The area of decreased attenuation in adductor longs muscle is not significantly hypermetabolic.  The 5mm area in the knee is less intense than on the prior exam (I didn't see it mentioned on the 1st report. They also see slight activity in the area where melanoma #2 (in situ lesion) was excised. Probably just from the excision.

I called the oncologist and saw him. He didn't sound overly worried as the SUV levels were not very high. He said "see the surgeon" and that they would talk. That was only last Friday and today being Monday they haven't talked yet. I thought the surgeon would stick a needle in and aspirate these lesions today, but he doesn't think that will give him all the info he needs. He wants to talk to the Oncologist and come up with a plan. Of course I'm worried because I can feel both these things and the one that's supposedly 6 mm feels  at least 2.5 cm in size. It seems to have come up fast and grown in the last week. Surgeon says surgery on my leg is going to make swelling and lymphedema worse. Tentative plan made to biopsy these areas in surgery. Oncologist thinks 50/50 chance these things are not more melanoma. I don't like those numbers.

I had the month of high dose Interferon previously and finished mid may. My 1st lesion was ulcerated and had a high mitotic rate 10/mm squared. 

Do they usually take these lumps out? Or do they leave them in and do systemic treatment? Or do they do both?

My head is spinning. My family is very worried. My husband started crying when talking to my daughter and she is very worried. Also had to tell my daughter about my sister who has breast cancer-actually a large lesion in one breast and having a MRI guided bx on opposite breast tomorrow. So it could be bilateral and she will likely need chemo to shrink the tumor before they can even do surgery. This sucks!

Now of course I need to research treatment. Don't know if my stage has changed. And then there's the whole alphabet soup of genetic markers. How do I find out about those? Because it sounds like you need to know that to know what best treatment is. I'm feeling overwhelmed.

 

Juiie in Las Vegas

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stanscott's picture
Replies 2
Last reply 6/15/2011 - 10:02am
Replies by: Carol Taylor, lhaley

This time no mm. Yeaaaaaaaa. I do have a new BCC. Waiting to hear on procedure.

Music is the river that navigates history.

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lhaley's picture
Replies 11
Last reply 6/15/2011 - 9:35am

Went back for my post op visit today. Results were as expected but an added twist.  The tumor was on the ulnar nerve (funny bone). Dr White was able to remove the tumon intact, however he could not get any margins.  Technically I am NED (yeah!!!), however, now I have to make some decisions.

Radiation was "lightly" suggested. They definitely want me to talk to a radiologist at Charlotte. He will give me the odds if it will work and the odds that it will damage the nerve.  The tumor board has given me some thoughts but have told me that the decision is mine and they want me to talk to the radiologist.  On the day that I talk to him I will also talk to my mel specialist and get his thoughts. It seems that a new trial is coming to Charlotte for resected disease. The surgeon did not know the logistics and could not give me any info. He only brought this up in response to a question that I had.  All of the trials that I know of you have to have hla 201 positive, and I don't have that.  But, maybe something new is coming.....

Had a hida scan today and found out that the gallbladder is not functioning correctly. Suggestion is to remove but because of the specific issues that I'm having they don't know if it will stop the pain issues.  This scan had been put off because of the new met and surgery in the arm. Thinking on that one. Have already talked to 3 surgeons and all 3 gave me the same thoughts. The hida scan at least proved what was believed.

So, my question is, have any of you had radiation along a nerve area?  What type if any nerve damage did you have? Was it successful for loose cells?

Good news was that when I actually got to read the PET from a few weeks ago it actually says that the lung nodule has shrunk and is termed "inactive"!!!!  

Linda

NED 1 week and hopefully will stay that way for awhile!!  It's been too long since I could post NED!

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http://abstract.asco.org/AbstView_102_78772.html
A phase II trial of nilotinib in the treatment of patients with KIT mutated advanced acral and mucosal melanoma (NICAM).

http://abstract.asco.org/AbstView_102_79034.html
BRAF, NRAS, and KIT mutational analysis of spindle cell melanoma.

http://abstract.asco.org/AbstView_102_79248.html
Aberrations of KIT, BRAF, NRAS, and PDGFRA in Chinese melanoma patients and their significance: Large, scale analysis of 644 patients.

http://abstract.asco.org/AbstView_102_81787.html
Feasability and reliabity of the assessment of BRAF and c-KIT mutations in cytologic samples from metastatic melanoma.

http://abstract.asco.org/AbstView_102_79034.html
BRAF, NRAS, and KIT mutational analysis of spindle cell melanoma.

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

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K in LA's picture
Replies 5
Last reply 6/15/2011 - 4:53am

My husband is due to have infusion #4 next week & one of the sub-qs on his scalp has started bleeding with, to quote him "bits dropping off".  A lesion on the side of his chest also began seeping/bleeding this morning.  Has anyone else doing Ipi experienced this?  We're hoping it's a good sign as a couple of his other sub-q tumors aren't looking as "robust" as they were...

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