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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EricNJill's picture
Replies 60
Last reply 8/31/2011 - 10:06pm

At 12:12 a.m. Eric is now an angel in heaven.  My heart is broken.  Now that Eric is finally at peace, my battle is just beginning.  Please pray for God to give me strength.  Eric is my hero, my soulmate and now my angel.  I love you forever, Eric.

JillNEric in OH

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I am curious if anybody has participated in these trials at NIH?  Dave could not qualify at this time for the TIL and TBI trial due to the surgery being too risky to harvest the tumor.  If he progresses and there is disease that is resectable, then he could.  These were two other options presented to us if his tumor shows either of these expressions.

Any info would be greatly appreciated!!

Maria

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Julie in SoCal's picture
Replies 1
Last reply 8/2/2011 - 11:10pm
Replies by: mombase

Dear Friends,

I'm just posting to say hey and that I'm now 3 years NED.  There were days I didn't think I'd get this far, but thanks to God's care and good doctors, I'm in mainland Southeast Asia (mostly Thailand & Cambodia) doing dissertation research. Whowuddathunkit!?!

I don't post often but as often as I can I read and try and keep up with you all on this board-- saddened to hear of a warrior's passing and rejoicing with each clear scan.  You all have been a great source of information and realistic encouragement to me!  I'm grateful!

Here's wishing NED to you all!

Blessings

Julie in So Cal

3A, primary on back of hand,

SNB, LND, HD INF, 11 mos  GM-CSF.

Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, IPI, PEMBRO.

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benp's picture
Replies 24
Last reply 9/23/2011 - 9:41am

Hi, 

I was wondering if anyone knows if it is possible for foreigners (in my case, Australian), to take part in clinical trials held in the US? Has anybody here done this before? 

Thanks, 

Ben.

(Stage IV)

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WalterA's picture
Replies 5
Last reply 8/3/2011 - 2:48pm

In March I had RFA treatment for liver mets. I had a follow-up scan yesterday, and it was really good. Nothing but scar tissue showed up, and my oncologist was pleased.

"Thus I am!" -- Guido in "The Ring and The Book "One day is worth two tomorrows." -- Benjamin Franklin "If it ain't baseball, who cares?" -- Me

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AlanM's picture
Replies 8
Last reply 8/22/2011 - 10:39pm

I had a brain MRI in April to check for issues that might cause the ear-ringing I am experiencing. They found no inner ear issues but did find one 7mm met on the left frontal lobe. This took from me from 3C(diagnosed June 2010) to stage 4. Subsequent PET/CT scans have shown no other mets. In May I had the brain met zapped with a Gamma knife and that appears now to be stable. My oncologist is recommending Yervoy as a way to finish off the one met that I have and to put the brakes on progression. Has anyone here used Yervoy in a similar situation?  Given the possibile side-effects of Yervoy, I am weighing the options of only using Yervoy IF something else presents vs using it now and taking the risk of an immune system run amok.... Any thoughts?

Alan

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AlanM's picture
Replies 9
Last reply 8/2/2011 - 8:33pm

I had a brain MRI in April to check for issues that might cause the ear-ringing I am experiencing. They found no inner ear issues but did find one 7mm met on the left frontal lobe. This took from me from 3C(diagnosed June 2010) to stage 4. Subsequent PET/CT scans have shown no other mets. In May I had the brain met zapped with a Gamma knife and that appears now to be stable. My oncologist is recommending Yervoy as a way to finish off the one met that I have and to put the brakes on progression. Has anyone here used Yervoy in a similar situation?  Given the possibile side-effects of Yervoy, I am weighing the options of only using Yervoy IF something else presents vs using it now and taking the risk of an immune system run amok.... Any thoughts?

Alan

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StevenK's picture
Replies 3
Last reply 8/2/2011 - 9:12pm
Replies by: Jydnew, StevenK, Janner

My new dermatologist had my path slides reread by "his" guy, whom he trusts and there were a couple of changes. My depth grew from .60 to .66 and my mitotic rate got more specific from >1 to 4. The mitotic rate really scares me and makes it more likely that I'm going to go forward with an SND. I meet with my new surgical onc next week. It's been such a difficult and stressful road trying to get an SNB since my first surgical onc stopped returning my calls and I've had to find a new one. Probably, since two months have passed already since my WLE, it makes sense to get a PET scan first. If cancer is in my nodes, it's had 2 months to grow. That will be one of the questions I ask my new surgeon.

I guess the high mitotic rate means I'm more likely to experience a recurrance. Do those happen on the skin mainly or is it likely to be internal? It was nodular melanoma, the new path detrermined, so I was very lucky to catch it when it was still so shallow. I wish I had been given the SNB choice back when I had my WLE. I feel nervous and unsettled. Every few hours I check my lymph nodes, but so far they remain normal. Can't wait until I'm finally past all the initial staging stuff.

Steve

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JerryfromFauq's picture
Replies 8
Last reply 8/2/2011 - 3:46pm
Replies by: JerryfromFauq, Anonymous, Teodora, Becky, MichaelFL

Many times recipes have been exchanged on this board.  Many pople, as well as Rox has provided many tasty ones.  Please folks, let's change the subject to ones that many of us are more comfortable with. 

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

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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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