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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bball's picture
Replies 3
Last reply 8/1/2011 - 9:42pm

what is normal protocal for ct scans in first year 2a. also having pains in my upper abdoman but had clear ct scan 5mos ago . any input?

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Nebr78's picture
Replies 7
Last reply 8/2/2011 - 8:19am

Now that I have stopped anymore chemo and am ready for hospice when I need it, it seems as if  my Cancer Dr. don't care much about my condition at all.  Of course he don't make as much money this way and not administrating chemo.  I apologize for being a bit bitter, but I am afraid all this cancer treatment, etc. is done just for the money.  Research sure isn't coming up with  anything.  I am going to donate my body to a Medical School so lets hope they can learn something from it. Heart Disease for over 40 yrs. and Melanome for 7-8 should provide something interesting.

 

 

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Ray from NYC's picture
Replies 6
Last reply 8/2/2011 - 10:10am

Hi all,

I have a close family member who is Stage IV melanoma, and I have some questions about Yervoy and its side effects.  Any feedback would be appreciated.  Thank you very much!

1.  Is it good to get side effects, particularly diarrhea?  And is it better to get them quickly?  I understand the side effects can be difficult to deal with and even dangerous, but do they mean that there is a better chance the ipi is working?  If so, could you point me to info/data/studies/reports on this? 

2.  If you get diarrhea and then are given a corticosteroid (prednisone) to counter-act those effects, does the prednisone act to partially/completely reduce the efficacy of the ipi? 

3.  Can the ipi and/or prednisone be a reasonable explanation for unexplained and very sharp and debilitating hip pain in one hip?  (This one hip also has an artificial replacement.)   A team of doctors (oncologists, surgeons, hip experts) have ruled out the patient's melanoma as the cause.  Tests run for this include X-Rays, MRI, bone scan.

(Any cites to news or journal articles, etc., would be appreciated.)

Thank you very much!  From reading the posts here, this is a wonderful community, and I wish everyone the best.

Ray

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emilypen's picture
Replies 4
Last reply 8/4/2011 - 10:25pm

Hey All,

So after finding out on Thursday that my husband had at least 4 brain mets seen on CT, we spoke with our radiologist. He arranged for an MRI on Friday afternoon and called us in the evening to let us know the results. 

Jason has 6 visible brain mets, and a few of those are quite large. So the doctor feels that we should go ahead with WBR.

After reading all the many articles/research that many of you posted and hearing 2 opinions from oncologists, the risk of more brain mets appearing decreses from 50% to 20% if he is responsive to the WBR. And given the amount of lesions it's highly likely that more will appear.

So he'll start WBR this week and hopefully be able to reduce the amount of steriod he's on before the next IPI infusion.

The doctor did say that there is some evidence that starting a steroid during IPI treatment does not reduce the chance of it working, And since he's only on 4mg dexamethasone twice a day  he should be able to reduce the dose before the next IPI treatment.

Jason said to me yesterday that he thinks the IPI is working. He doesn't know why he feels that way, just a gut feeling. So I'm going to go with that gut feeling and believe that it's working! We will get through this!!

Does anybody here know how long after you complete the WBR treatments you need to stay on steroids?

 

thanks,

Em

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TracyLee's picture
Replies 10
Last reply 8/3/2011 - 7:14pm

Hi y'all,

I have fluid (and nodules) in my lungs. Last Wednesday, I had my left (worse) lung drained.  They didn't want to do both sides, as the right wasn't too bad as far as fluid.

I felt great on Thursday, started feeling "gaspy" again on Friday. (Also had my 4th Yervoy on Friday, had the Phys assistant assess me, she could hear I was filling up but didn't feel it was too bad).

This morning, I'm just miserable. I'm stuck between waiting for U of Penn to get me scheduled for my BRAF consult (so I could begin to take meds and shrink nodules AND reduce fluid) and having my lung drained again.

Is it common to have such a short window of relief when draining your lung?! Soooooo frustrating! Obviously, until we deal with the underlying issue of nodules/fluid, I'll just keep filling right back up.

I have so much sympathy for asthma sufferers, this is just awful! I'm getting a chest x-ray today, and they will try to get me scheduled to drain. Meanwhile, I feel about 900 years old!

TracyLee

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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(I have reposted this here from the off topic in hopes of further assistance) I know this is breast cancer, but it never hurts to ask!

From:

7/31/2011
9:03am

Dear All

My wife has Stage IV secondary breast cancer ( http://www.clairefaulkner.co.uk )

We have come all the way over from England as the NHS ( National Health Service ) back there have basically told her that there is nothing else they can do, to the Burzynski clinic here in Houston, Texas.

The doctors have put together a plan that comprises of Abraxane/Avastin and Tarceva. 

My wife is allergic to Taxol and i believe that the Abraxane is of the same family but composed differently, I would love to hear from anyone who is allergic to Taxol but has managed to have Abraxane and how they have found it.

Also trying to put my wife's mind at ease i would love to hear of other peoples stories regarding the combination of these drugs, their success rate and side effects. 

Many many thanks for taking the time to read this. 

Christopher.

(My response to the post:)

Hello Christopher:

I will re-post this for you on the main forum as this is the off topic forum. You will get more responses there. I also must tell you that this is not a breast cancer forum, but maybe someone will be able to assist you.

You are correct, Taxol and Abraxane are both Taxanes, but Abraxane uses no premeds as it does not contain the chemical cremaphor, which is made from pine trees which MANY people are highly allergic to.

A little more depth: Yes, Abraxane and Taxol are similar drugs, but Abraxane is further reacted with albumin (and a sugar molecule) so that the result is water soluble. Taxol by itself is not water soluble so it must be emulsified with Cremophor EL (which is highly refined castor oil ethoxylate). It is the Cremophor EL that people are allergic to which is why benadryl and decadron are given as premeds. Since Abraxane is self emulsifying, you do not need the premeds.

Michael

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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boot2aboot's picture
Replies 20
Last reply 8/2/2011 - 2:17pm

wanted to update everyone on what is going on

i have fast growing mel that spread to lungs and liver since i was initially diagnosed stage 3c in april...found out i am braf + for V600e...and venfenib is not offered here yet...

i am doing 2nd round of cvd (cisplatin, decarbazine and vinblastin) which is kicking the shit out of me...i get rescanned on the 15th of august and on the 16th, my records and i are going to tampa to moffitt to interview for braf/mek trial there...i did finally find and talk to an onc here in uh-oh (ohio) about yervoy and they seem to want to hold off until my status for trial...when i mean chemo is kicking the shit out of me is 

a. i think it is affecting my heart

b. definitely affecting hair loss, bowels and energy

c. i hate this shit

d. i have a 'gut ' feeling it isn't working...just instinct, but i trust my instincts more than oncs here

e.i am scared

f. i feel these oncs don't want to do anything with me (feel this lump here, or there) and go by scans and blood tests alone and don't care about side effects...

g. i don't want to research this crap very much any longer.

boots

don't back up, don't back down

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Lisa13's picture
Replies 12
Last reply 8/1/2011 - 3:54pm

I've been thinking about all these "stat numbers" for ipi and all other drugs in clinical trials. These results are from a large group of people from different ages, health status, sex, etc.  My question is, have any of these studies been broken down (mainly in Stage 4 patients) in terms of M1a, b, c, LCD levels, health etc?  I think any of the results would be very different if they were broken down in these groups since some people with Stage 4 are healthier and have controlled disease over others.  Take for example, the TIL program at NCI. My oncologist mentioned that even though the results are good from this trial, Rosenberg is very selective in who is accepted in the program and it's mainly people who are healthy, so these people would generally do better under these circumstances, or so you would think. 

Going into an ipi trial myself, I look at all the numbers from previous trials and wonder what everyone's predicament was at the time. With IL-2 - they claim that 6% have a complete, durable response - were these people younger, healthier, less disease, etc??  As I'm fighting this beast, I dwell too much on the numbers and look for the odds that something will work and it drives me crazy!  I'm going to try very hard to go into this ipi trial and just hope for the best and not dwell too much on the numbers.

Lisa - Stage 4

Many impossible things have been accomplished for those who refuse to quit

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I know it has been a few days, but I just wanted to mention that Rocky Lovelace has left us. He was know here to some as "RockLove".

You can find his obit here:

http://www.legacy.com/obituaries/sptimes/obituary.aspx?n=earl-m-lovelace-rocky&pid=152810956

http://www.tributes.com/show/Earl-Lovelace-92008463

May he rest well and fly free.

Michael

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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Jodi E's picture
Replies 2
Last reply 7/30/2011 - 11:07pm
Replies by: Jodi E, MichaelFL

If this is not appropriate to post on the bulletin board, please reply directly to my email at mtncom@aol.com

 

Thanks,

Jodi

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ValinMtl's picture
Replies 21
Last reply 8/4/2011 - 10:29pm

Just to let you know that I have been randomized and will be in the TIL (total body irradiation).  I have been down here doing final tests this past week which have to be done within 3 weeks of treatment, the colonoscopy was a bit of a scare, biopsy showed something but proved to be most likely from ipilimumab drug and was healed..thank goodness, or I would have been off the trial.  If I hadn't been on TBI arm, I would be flying home today but now I'll be staying another week for them to do apheresis to harvest my stem cells for radiation.  So today, I'll just be a tourist in Bethesda and take a break from it all. 

I can't say enough about how blessed I am to be accepted into this trial.  THANK YOU AGAIN WARREN, a million times for the contacts.  I know it's tough..but that's how it is with melanoma and my right leg is sooo nasty now with many smaller sub-qs and some terrible weeping large ones - to be cleaned daily.  The good news is that the two masses are gone from left groin since they were used for removing the white cells...which are still being fed in the lab until they are ready for re-entry.

Val

Live Laugh Love Nothing is worth more than this day!

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himynameiskevin's picture
Replies 14
Last reply 8/11/2011 - 1:29am

I realized not too long ago, that I haven't updated on here in some time. So here I am, there's not much to update on. Which in a way is good thing. I went back to the NIH about a month ago for my 6th follow up visit for monthly MRI and CT scans. The scans showed that there's still tumors all over my lungs and that they haven't really gotten any smaller from the previous month maybe a couple percent. If that. But the important thing is that nothing is growing, nothing new is showing and my brain is still clear. So of course, not the result we would all hope for. But good news and good result nonetheless. They've decided to let me take a two month break this time. And they're going to stop MRIing my brain since that last 10 MRIs show that it's been clear since the one nodule I had eradicated last year with the streaotactic radiation. So I go back August 30th. I don't know what is going to happen, but again, I'll cross that bridge when I get there. 

By the way, last week, July 23rd, was exactly one year since my dermatologist gave me the life changing news of "metastatic melanoma". The feelings and thoughts were indescribable, and although I hoped, I didn't imagine being where I am right now. Some IL-2, a little radiation, a bit of surgery, and some adoptive cell therapy has me feeling as physically normal as I ever have. Doing all the same activities I did before, (biking, camping, skydiving, music, swimming, reading, eating, loving, laughing, living). Even though I've still got these undesirables in my lungs, I can't really feel them. I mean sometimes I'll get a random pain. But everyone gets random pain so I don't know.  But I'm doing good for the most part. I've done more "living" in the last 8 months then I have in the last.... ..years.  I just hope I can say the same next year. I figure, if I can make it one year, well then maybe I can make it another. And then maybe do that again. And possibly again. And again... Next thing you know I'm 80. Oh that'd be nice...
We'll see.

 

Well that's all I've got for now. I'll keep updating time to time.
To everyone I know, and those I don't, I hope you're doing well.
-Kevin

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AZ_Gal's picture
Replies 14
Last reply 8/6/2011 - 7:55pm

Ok so I'm exactly one week away from my SNB and WLE and totally freaking out. Only had surgery once before and it was horrible. they told me i'd wake up with my husband next to me and i woke up sooner than planned he was there, the tube was still in my mouth, which meant i couldn't ask for him. and i was freaking out not knowing why i couldn't talk.

This time i have 3 beautiful children waiting for me at home. Thankfully my husband was able to get his FMLA put through so he could go the to surgery with me, and my mom will stay with my kiddos. but I'm still freaking out. it is all i can seem to think about. the what if crap is getting old. what if they find something? what if there is a complication? what if.... what if.... what if.... ugh!!!!

 

Any ideas on how i can get over the freaked out part of all of this?

 

Thanks guys!

 

Kim from Arizona

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Gene_S's picture
Replies 4
Last reply 6/25/2012 - 2:50pm

Hello,

Many of you know that I am part of the Vervoy clinical trail with Vervoy (Ippi) with GM-CSF or just Vervoy and no GM-CSF. Mine is with the GM-CSF. Today was my first maintenance follow up treatment ( my fifth dosage of ippi ) ,as this is part of the trial. I am on the high dose version 10 mg/kg.  Any way back to the Subject.  My nurse today informed me that this trial closed yesterday (July 28,2011) as BMS has enough patients for their study trial. My melanoma tumors are regressing very well with the ippi and the GM-CSF treatments.

Best Wishes to all fighting this beast!

Gene, Stage 4

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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smap's picture
Replies 4
Last reply 7/30/2011 - 2:08pm

Hello All,

 

My mom has completed 4 infusions of yervoy and we are waiting to get the report back on her scans any day.  A couple things have changed recently and I was wondering if anyone else has experienced this after being on yervoy for a while.

1.  She is really confused:  She can't tell the difference between tylenol and clorospectic throat spray;  she can not remember any of the medicine she has been taking daily.  My mom is only 44 years old and before this took LOTS of meds for asthma and kept up with everything to a "T".  We are having to assist her with meds and remind her frequently of who she's talking to, etc.

 

2.  We ordered liver function blood work and it came back only slightly "off".  She is stage IV with mets in liver, spleen, lungs, rt. kidney, bones, and lymph nodes in the neck.  We have not had a scan in over 3 months (since before we started yervoy).  She's in lots of pain, with new spots popping up here and there, although they seem to be growing more slowly than usual.  We've been having to help her walk around and she doesn't make it very far until she's back in bed.

 

3.  Has anyone else experienced this degree of confusion and forgetfullness while on yervoy?  She is on 30mg. of morphine 3 times a day and takes more if needed in between.  But the confusion and forgetfullness is persistent, even when she hasn't had much pain med.  For example, this morning she had a 30 mg. morphine at 9 a.m. and at 1:30 p.m. she was confused about her medicine.  So, I feel like the morphine is not causing the confusion, it just knocks her out for about an hour after she takes it.  

 

Okay, I hope this wasn't too long or confusing!  Thanks in advance for any help!

 

Stephanie

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