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.

Expand/ Collapse Topic
 
Replies By
View Topic
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

Login or register to post replies.

emilypen's picture
Replies 12
Last reply 8/1/2011 - 2:30pm

Hey All,

Jason just finished his 2nd dose of IPI today.  So far no side effects.

Unfortunately we found out yesterday that he now has at least 4 brain lesions. He had a CT last Friday and they were seen on that. So Brain MRI tomorrow and then we decide between WBR or Gamma knife. Our radiation oncologist is great and he's making sure things happen fast.

Our oncologist did say that Jay's bloodwork from Wednesday shows an increase in lmphocites, which is a positive sign that his body is having a response to IPI. So fingers crossed. Our hopes are that if the radiation can take care of the brain mets then hopefully IPI will kick in before any more show up.

Luckily he is having no symptoms of brain mets, so they're hoping they caught them early.

The pregancy is going well, 10 weeks now. Due date is Feb 2012, every part of me is hoping and praying that IPI kicks the beasts butt so he's here to enjoy the baby with me.

keep fighting,

em

 

Login or register to post replies.

Nebr78's picture
Replies 6
Last reply 8/1/2011 - 8:52am

I finished my radiation treatments then Dr. gave me a chemo with 2 medicines and I don't know what all.  Anyway about 2 days later I was the sickest individual without dieing which I wanted to do. Any way this went on for 10 days and am still not well.  Went to an Oncologist yesterday and he made it quite clear.   Since I want no more chemo, he suggested I look into Hospice plans.  That  I am doing.   I am still not quite convinced it is the Melanoma on the spine that is doing it. Radiation must not have stopped it.   I am going to ask if I could take another CT scan just so  I can see.  Last one was nearly a month ago.   But the Dr. I talked to seems to think it is all over the body . I am taking a lot of pain medication for pain in right hip.   Guess that could be coming from the spine.

Having heart disease for over 40 years, and melanoma for about 5 years, enough is enough.  I am 79 and have had a good life.   Retired for 17 yrs. and that is not bad.  Except that someday I would like to go  all day without  pain.

I don't much about Hospice Care but will find out the next few days.    Thanks to all

Login or register to post replies.

(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.

Login or register to post replies.

Replies by: SuzannefromCA

Dr. Servan-Schreiber, Author of Anti-Cancer: A New Way of Life Passes Away.....His brain cancer returned in May 2010 .... However, he survived almost 20 years after his diagnosis when he says the doctors originally have him 6 year life expectancy.... Hawaii Bob

 

David Servan-Schreiber, who wrote about cancer battle, dies at 50David Servan-Schreiber, a French-born doctor and neuroscientist, became an advocate of harnessing the body's own defenses to fight cancer after learning he had a brain tumor 20 years ago. He turned his personal journey into books that changed how the disease is viewed and treated.

  •  
 
David Servan-Schreiber

From David Servan-Schreiber's research came the book “Anticancer: A New Way of Life,” published in 2007, that sold 1 million copies and led to a sea change in how cancer was viewed and treated. (Viking / Penguin / July 26, 2011)

 

By Kim Willsher, Special to The Times

July 26, 2011

 

When he was diagnosed with a malignant brain tumor 20 years ago, David Servan-Schreiber, the French-born doctor, neuroscientist and later bestselling author, took the phrase "physician, heal thyself" to heart.

Submitting to the punishing traditional treatments of chemotherapy and radiotherapy, he still felt there was something more he could do to enhance his chances of survival.

Armed with his will to live and a belief that the human body had little-known cancer-combating capacities of its own, he set about looking into the way we understand and battle the disease.

From his research came the successful book "Anticancer: A New Way of Life," published in 2007, that sold 1 million copies and led to a sea change in how cancer was viewed and treated.

Servan-Schreiber's near two-decade exploration of the science of cancer was a personal and professional journey that took him from the verge of death to good health and back again twice before ending in his death Sunday at a hospital near his family's home in Normandy. He was 50.

Even when told last year that the brain cancer had returned and would almost certainly kill him this time, Servan-Schreiber refused to give in, continuing to promote the idea that, parallel to traditional medicine, healthy eating along with meditation, yoga and "a new way of life" could extend the lives of cancer sufferers.

David Servan-Schreiber was born in the wealthy Paris suburb of Neuilly-sur-Seine on April 21, 1961, the son of a celebrated French family with Prussian Jewish roots. David was the eldest son of Jean-Jacques Servan-Schreiber, a respected journalist, essayist and politician, who died in 2006.

He studied medicine at a children's hospital in Paris, finishing his medical degree at Laval University in Quebec in 1984 before specializing in psychiatry in Montreal and moving to a research post at Carnegie Mellon University in Pittsburgh, where he earned his doctorate.

In 1991 he went to Iraq as a volunteer medic with the French-based Doctors Without Borders, the nongovernmental organization that won the Nobel Peace Prize in 1999, and later co-founded the U.S. branch of the charity.

The story goes that he discovered he had a brain tumor only when in 1991 a research patient failed to turn up for an MRI scan and Servan-Schreiber took his place.

He underwent treatment but had a relapse a few years later and began to seriously turn his mind and his work to the effects of diet and lifestyle on the incidences of cancer and depression.

His first book, "Healing Without Freud or Prozac," published in 2003, was translated into 29 languages and sold 1.3 million copies. "Anticancer" followed four years later.

Certain critics dismissed Servan-Schreiber as a "new age guru" who proposed quack theories that more vegetables, more exercise and less stress were a cure for cancer. On the contrary, he was quick to admit that traditional methods such as chemotherapy and radiotherapy were the first and most important salvos in the battle against the disease. However, he believed the body harbored a number of natural defenses that could create a terrain in which cancer would find it hard to thrive.

Said Ursula Gauthier, journalist and coauthor of his last book, "We Can Say Goodbye Several Times": "He wasn't a great thinker, a philosopher or a mandarin of science or medicine. He described himself as a scientist and a human. He was a mixture of heart and head, intellect and emotion."

Servan-Schreiber was told his cancer had returned when a brain tumor, which he called the Big One, was diagnosed in May 2010.

At the time he said: "Death is part of life. It happens to everyone. Profit from now, do the important things.

"I am convinced that 'Anticancer' has played an important role in the fact that I survived cancer for 19 years when the first diagnosis gave me only six at the most."

Survivors include his wife, Olga Tereshko, and a son, Alexandre.

 

Login or register to post replies.

Jydnew's picture
Replies 6
Last reply 7/31/2011 - 12:47am

Hi all,

My husband has his annual CT scan next Thursday, and as usual, scanxiety has set in early with me.  His oncologist says that this will be his last CT scan as the benefits of scanning do not outweigh the risks at this point.  He is 9.5 years out from a stage iiia diagnosis, and has been NED the entire time. 

I know it's magical thinking, but I have these terrible feelings that because the onc says this is his last scan, something will show up and it will be the start of hell.  My husband is looking forward to no more scans, but it worries me that we'll have no more real knowledge after this point.  I know that most/many recurrences are found by the patient, not on a scan.  I also know that at this point, it is much more likely that he will live the rest of his life melanoma-free.  However, I know that melanoma is a hiding bitch and that it can come back at any time.

I realize how whiny this must sound - worrying about things that could be, but that are not happening right now, when so many people here are going through real hell. 

Just needed a venting place to put some of my fear.

Thanks,

Wendy

wife of stage iiia survivor - dx Jan 2002. 1.3mm ssm on right tricep, no ulceration; snb found spread to 1 lymph node in armpit, complete lymphadectomy = NED since March 2002.

(I added these details for people who are newly diagnosed and are searching for long-term stage iiia survivors)

Login or register to post replies.

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

Login or register to post replies.

MaryBeth and Jeff's picture
Replies 12
Last reply 7/30/2011 - 4:41pm

What an emotional day today. Some of you may have read my previous post where my husbands medical oncologist felt he was a Yervoy non-responder......Well... we met with the Neurosurgeon today to go over the findings of yesterday's MRI. Of the 19 brain lesions most are gone and the remaining few are barely visible!!  The neurosurgeon was amazed to say the least. He said he actually expected to see many more new lesions as he felt the brain mets were very aggressive (an increase from 5 lesions to 19 total in 2 1/2 weeks)  and he has never seen 19 lesions respond like that. He attributes this to the Yervoy! (per neuro he hasnt seen Gamma produce such amazing results on so many lesions)Granted my husband is still fighting the ever increasing tumors, nodules and sub q's on his neck, back, legs, arms etc. which seem to have appeared rather rapidly after his 3rd Yervoy treatment. (He finished his 4th and final Yervoy treatment on July 15th). His neuro does not feel these are immune responses...but hey, let him stick to his gamma knife expertise...because the medical onc was mistaken in determining my husband was a Yervoy non responder. I give all the Glory to God and continue to pray for all of the fellow warriors who are fighting this insidious disease. 

Login or register to post replies.

cfw9186's picture
Replies 7
Last reply 7/30/2011 - 3:10pm

 

south

Posted a few seconds ago
Things have gotten pretty rough here lately:  had bad sinus infection since the 6th of July, FINAALLLLLLY got some antibiotics about the 13, took for 5 days still felt like crap, so week, could not eve  get out of bed since the 6th because of head aches, the after the antibiotics, still was so week , then saw spin wheels again called dr.b., had an MRI and found our more tumors, plus my blood showed low on hormones, thyroid, so he put me steroids for the swelling in my brain and thyroid  for my metabolism.     

.dr b doesn't  seemed very encouraged that my IPI is working although I am holding out for weeks 12-14.  I find it weird that this has all started after the 4 and final infusion.

He suggests a chemo in pill for my brain may be the next best step..........Have appointments with both Drs. tomorrow,,,,,,,,,,still trying to remain hopefully.

Hanging on the the edge of a mustard seed.  :)  Love to all  Kitty

Get a skin check at least once a year by a dermatologist and stay out of the sun.

Login or register to post replies.

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

Login or register to post replies.

sharmon's picture
Replies 5
Last reply 7/30/2011 - 9:51am

Hi, Brent has cellutitus in his right leg from lymphedemia conplications.  A few days ago he found a lump that was tender.  The doctor has put him on antibiotics but they don't seem to be working.  I need some help.  I know we shouldn't wait and we see the doctor on Friday.  I know this is serious and could use some feedback.  Thanks

Login or register to post replies.

Steve0805's picture
Replies 23
Last reply 7/30/2011 - 2:28am

So im new. my names Steve, im in good health far as i can tell. I noticed a lump about 6 months ago. I had no kind of insurance and little help getting to get it checked out. When i did about 3 months later they just felt it and said it didnt seem like cancer and we can cut it out if you want. so i spent the next 3 months trying to get Insurance. The lump grew to the size of a baseball before it was removed a week and a half ago. I went in for my post op today and the they told me they found Melanoma. I have no visible signs of problem that i can see on my skin. Im freaked out of course, dont want to tell my family yet, and everytime i look at my kids i have the hardest time not breaking down, not sure what im asking or what im here for. just scared and figure other people here might know what its like and where things go from here. waiting for a call for my appointment to get a PET/CT whole body scan whatever that is. should be in the next few days or so.

Steve

Login or register to post replies.

MariaH's picture
Replies 9
Last reply 7/30/2011 - 1:06am

We have started the process for Dave to go to NIH on Tuesday, 8/1, for a consultation regarding the TIL clinical study.  He has already been approved to start IL-2 at Roswell on 8/15 if he does not like what NIH has to say.  He would rather be treated locally, but if the response rates we have heard about regarding this therapy are true, he will go to Bethesda.  His oncologist, Dr. Khushalani,  totally supported his decision, and put together all the necessary paperwork to fax down to NIH (even emailing me Rosenburg's latest report study on this trial last week for our reference). His PET result was good, indicating only the lymph nodes in the chest (bulky disease), and two very small hot spots - one a node by his collar bone, and one a possible sub-q near his original primary.  Both were too small to see on a CT scan.  His brain MRI was clean, and nuclear stress test and breathing tests were good.  On a side note, he was B-RAF wild type - so I am assuming that any future trials with B-RAF and IPI would not be a possibility for him.

Hopefully we will know by next week what his decision will be for treatment.  Because his disease is bulky, they do want him to start something quickly, as the nodes are pressing on some vital blood supplies that we do not want compromised.  Although, if they were he would have to have radiation prior IL-2, which is one of the options we had pursued.

Thanks to all of you have replied over the last few weeks - you have led us in the right direction.

Best wishes to all,

Maria & Dave

Login or register to post replies.

deirgey's picture
Replies 6
Last reply 7/29/2011 - 11:30pm

Hi all,

  I know there have been a lot of questions about Yervoy lately but my after my dad had his 2nd shot, he started to get extremely bad pain in his hip.  I haven't seen anybody post anything about this.  His doctors have ruled everything out so the only explanation we have is that it could be the Yervoy causing it.  This has been going on for several weeks so far and he's had no relief.  We are still hopeful that Yervoy is working for him though! 

Thanks!

Deidre (Father Stage IV)

Login or register to post replies.

Replies by: KristinaW, Goddard71

I am looking for volunteers for the Morristown Miles for Melanoma event scheduled for September 25th in Morristown, NK.

We are looking for volunteers to work on our planning committee as well as volunteers for the day of the event.  

If anyone is interested in volunteering, please e-mail me at kwest@melanoma.org

 

 

Login or register to post replies.

Pages