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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Gene_S's picture
Replies 2
Last reply 7/19/2012 - 1:49am
Replies by: washoegal, Gene_S
Today my wife and I went to meet with a local Holistic Doctor in regards to her occasional rapid heart beats. Our previous experience's with a heart MD resulted in her getting asthma from a drug called Caduet.  I am not sure if they still prescribe this drug or not since it has been awhile since I have seen their TV advertisement that claims that they can cure two problems with one drug.  The two problems are for cholesterol and high blood pressure.  My wife took this prescription drug which resulted in her getting serious hives inside and outside of her body and now a life time of chronical broncial asthma.  So much for pharmaceuticals.  I guess that  I am really blessed that she survived this so called treatment and we are now moving on to the next solution.  Today she took a bioscan (also recommended by Dr. Oz)  to determine what course of action she should be taking.  The results showed that she should detox the bowels (even though she does go regularly), take sarsarpilla and parsley. This hopefully will cure her heart problems.
 
Afterwards I asked her about the causes of melanoma.  Which she informed me that melanoma and all other cancers is a result when cells have an imbalance and attack the other cells.  This is usually a result of not being hydrated (not a lack of thirst) as we do not consume enough of good water to flush out the bad cells in our bodies.  I have to agree with her as I do not drink nearly enough water to clean out my system.  Her recommendation is to take your weight and divide it by 1/2 and this should be the amount of ounces of pure water you drink daily.  An example would be that a 200 lb. person should consume 100 ozs. of pure water daily.  Some of this water can be obtained from the foods you eat and not strictly drinking that amount of water.  I was waiting for the S Bomb (you know sunshine) and guess what there was no mention of sunlight causing melanoma in our discussion.  For those interested in doing a bioscan the software that she had was made by a company named Compass.  I will do some more homework on this bioscan system.  You may be interested in it to see what you are lacking in your personal life style.  Also mentioned was the fact that any supplements that you take should be top notch and try to not buy synthetics.  She has very encouraging words to say about the Gerson Theory if you don't wait till you are on your deathbed and expect miracles.  There also is a truly Holistic Cancer Center in Florida if you want to go this route.  I know that there are many warriors looking for a solution to solve their melanoma cancer and I hope that this gives you some hope.
 
Best Wishes,
 
Gene (and loving wife Judy)

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

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cdavis324's picture
Replies 2
Last reply 7/18/2012 - 11:24pm
Replies by: cdavis324, Janner

I had Melanoma stage 3 in 2007 on right lower calf. Had large excision and SLNB. SLNB showed one node was positive. All Cat Scans and ultra sound have been good. I had a Pet Scan done this week.  

Findings: Head/face   Focal ssymetric hypermetabolism is inseperable from the right parotid and inferior right auditory canal, suv 5.0. physiologic FDG uptake is seen in the visualized region of the brain,large salivary glands and oropharnx.

Impression: 1.Focal asymmetric hypermetabolism is inseperable from the right parotid and inferior right auditory canal possibly inflamamatory/infecious etioloy or malignancy. clinical correlation recommended.

2. elsewhere, no hypermetabolic lesions

My Dr is on vacation for 2 weeks. Nurse called today with results but has to wait for covering Dr to view the report. She was not much help in explaining. Can somebody please help me understand these results. Thank you so much. 

Thank you

Chris

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justlittleoleme's picture
Replies 19
Last reply 7/18/2012 - 10:12pm

At 4:15 am today, I lost the love of my life. He fought a good fight until the bitter end. Someday I will write an update post to recap our past few weeks with this dreadful disease.
He was a father to three wonderful children. Daniel,19 Emily, 18 and Benjamin who is 9.
He loved his family above all else. He was the most selfless man I have ever met and was lucky enough to fall in love with.
Please pray for us this week as we say goodbye to his earthly body. We rejoice knowing he is with our Lord!
Thanks barb

We don't know how strong we are until being strong is the only choice we have.

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Anonymous's picture
Anonymous
Replies 16
Last reply 7/18/2012 - 10:06pm

I've read a number of profiles where the original lesion was Stage IA, early, thin, all removed with surgery, no follow up was recommended or needed other than skin checks, etc... only to have metastasis some years later and bad outcomes.  I guess I just don't get the info that is very common to see that says if caught early, melanoma is highly curable, highly treatable, 97% survival, etc....  How can that be the case when example after example on just this forum of early Stage IA'ers who developed metastatic disease?  Should someone with a 0.2 or 0.3 mm lesion that was treated be demanding further treatment of some sort, knowing the possibilities?

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CherylL's picture
Replies 8
Last reply 7/18/2012 - 6:38pm

After our first cycle of IL-2 at UVA with the amazing Dr. Grosh  in May, we got the GREAT news that my husband's lung tumors are SHRINKING!

For those seeking some positive glimpses of treament options, we're here to share any details of our experience you might wish. :) 

Yes, the treatment is rough, but for us---WORKING

We'll return in September for cycle two...which will be far easier to embark upon knowing the efficacy.

Our thanks and love and health wishes for those sharing the fight. 

Cheryl Lage
Wife of Scott, Stage IV and currently mashing melanoma for GOOD.
 

 

 
 

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fcrawford's picture
Replies 4
Last reply 7/18/2012 - 6:32pm

Good Afternoon all, 

I joined this website hoping to find help, My mother was diagonsed with anal melanoma 2 1/2 yeas ago, she has been through chemotherapy and radiation twice now and currently on her third time of radiation and soon to start chemotherapy again. About 3 weeks ago she was told, she is now terminal after finding the cancer had spread even more to include her brain. I worry about her a lot, especially since I am so far away, I am in the Marine Corps. I write today trying to find places that might offer her financial aid. While she is battling to keep her life, all she can think about is the medical bills, morgages, and other bills piling up. I hate to see her worry about these things when there might not be much time left. since her being diagonsed her health insurance has increased by $1,100 a month. If anyone knows of foundations or charities that will help her, please let me know. thank you. 

 

Cpl. Crawford

USMC

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Candi13's picture
Replies 11
Last reply 7/18/2012 - 5:39pm

Hi Everyone,

Here is an update on taking the  Merck Pd1 drug since December 2011.

Starting this trial at Stage 4, with tumors on leg, chest & lungs, my "first" set of scans showed NED. My doctor could not find cancer anywhere in my body. Such a miracle for only taking this drug for 12 weeks.

Just got the results of the "second" set of scans, and I continue to be NED.

As I side note, my side effects are occasional joint pain. Also, my thyroid lost some of its function so I now takes meds to supplement my thyroid. The study nurse told me that 8 other patients are also having thyroid issues. Apparently, my side effects  were also reported as side effects by BMS PD1 drug trial results at ASCO .

The study nurse also told me that many patients are showing a response. She commented that the response rate for thisMerck PD1 drug is very impressive.

I hope that this information on my experience with Merck PD1 gives you hope!

Wishing everyone a NED status.

Candi

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Replies by: Richard_K, Gene_S

Hi Everyone!!!

Been a long time since I've been on here. I will be NED for 5 yrs. next month!!!! Will also CELEBRATE my 45th birthday this week!!!! And will be a Grandma in December (I am sooo excited). Hope everyone is hanging in there and just always remember to KEEP YOUR SPIRITS UP!!!!

My question is.... Doc just told me my Cholesterol was HORRIBLE!! 297 total, good=77 and bad=220. Wants me to go on lipitor but I sure don't want it to lower my immune system. Any advice on this? I did some research and got conflicting info. on a few different sites.

 

Thanks!!!

SandyW

stage IIIB, NED 5 yrs!!!

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Watertree0513's picture
Replies 1
Last reply 7/17/2012 - 8:24pm
Replies by: Anonymous

Does anyone have any experience with Halo Moles and a growing halo?

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RobinS's picture
Replies 7
Last reply 7/17/2012 - 3:10pm

My mother is a very healthy 79 year old who was diagnosed with stage 3c Melanoma with 9 lymph nodes with tumors and extracapsular extension where cells had left the lymph node capsule.  She is going to start radiation and the recommended follow-up treatment is a 1-year schedule of interferon. At 79, my mother doesn't want to do the interferon given its limited success (10% have a delay in recurrence) and potential for a year of flu-like symptoms.  Does anyone have information about the treatment plan and side effects of vaccines that have been in clinical trials?  I appreciate any insight s you can share.  Thank you!

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Harry in Fair Oaks's picture
Replies 9
Last reply 7/17/2012 - 1:21pm

I'm now more than a year into this trial, and I'm doing very well.  No new tumors observed, all the soft tissue tumors are gone, and the couple of bone mets that are still seen on the CT are not showing any activity on the PET.  The drugs have proven very easy to tolerate.  While I had lots of joint pains and fevers a month or two into the trial, the only issues I now have are mild fatigue and the occasional (every couple of months) high fever.

The initial results from the trial (as reported at ASCO) indicate that this combo of BRAF and MEK inhibitors may be more effective than a single agent (e.g. Zelboraf) and is easier to tolerate, with fewer side effects.  My experience seems to bear this out.  I hope that this treatment indeed proves effective, and that it will benefit many others.  It is becoming somewhat of a hassle to keep up with all the scans and tests and appointments, but I keep reminding myself that besides perhaps saving my own life, I'm also doing my little bit to advance knowledge.

Best wishes,

Harry

Too ugly to die!

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LynnLuc's picture
Replies 2
Last reply 7/17/2012 - 9:46am

Latest message from his family:
"Steve Hock has officially left the building. No more pain, no more suffering, just peace. At 3:15pm In true Steve Hock fashion he made a grand exit, as he took his last earthly breaths to the sound of his favorite band Four Year Strong that began playing all by itself.................it is still playing. On behalf of Steve Hock & his entire family thank you........."

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Sherron's picture
Replies 7
Last reply 7/17/2012 - 8:55am

Anyone hear from him?  So many people I dont know anymore.

 

Take Care,

 

Sherron, wife to Jim FOREVER (19 MONTHS OUT NOW)  Still miss him so much.  Each day is a struggle.  Wishing you all well.

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Good Afternoon all, 

I joined this website hoping to find help, My mother was diagonsed with anal melanoma 2 1/2 yeas ago, she has been through chemotherapy and radiation twice now and currently on her third time of radiation and soon to start chemotherapy again. About 3 weeks ago she was told, she is now terminal after finding the cancer had spread even more to include her brain. I worry about her a lot, especially since I am so far away, I am in the Marine Corps. I write today trying to find places that might offer her financial aid. While she is battling to keep her life, all she can think about is the medical bills, morgages, and other bills piling up. I hate to see her worry about these things when there might not be much time left. since her being diagonsed her health insurance has increased by $1,100 a month. If anyone knows of foundations or charities that will help her, please let me know. thank you. 

 

Cpl. Crawford

USMC

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Linny's picture
Replies 3
Last reply 7/16/2012 - 4:22pm
Replies by: chalknpens, susanr, Anonymous

An interesting read:

“It turns out there’s a class of T cells (TH9) that make lots of interleukin-9,” Kupper said.  “With this clue we asked whether this could have something to do with the ability of mice to reject cancer.  We went on to do experiments to see if these TH cells that make interleukin-9 cells were good at rejecting cancer, and these are extremely effective at rejecting cancer cells – especially melanoma.”

Stage III, Unknown Primary; 1 positive node in left axilla

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