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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glewis923's picture
Replies 3
Last reply 2/10/2011 - 8:35pm
Replies by: glewis923, Linda J, NicOz

Dear All:   Completed my 2 SRS (NovalisTS) sessions where hopefully 5 brain tumors are now simply compost.  Next Mon. I start a 2 week WBRad. as i have at least 7 more "meaurable" 3mm + tumors and God knows how many microscopic c-cells.   SO.....I have no choice but to WBR.

 

Despite a lot of "scare stories", I ain't really skeered a lik, BUT,  I would like any advice on those of you who may be already an official ranking member of the exclusive WBR Club.  Like:  What should I eat,  what to realistically expect, and anything that may be from your 1st hand experience.   I'm pretty tough, triple chemo didn't hardly phase me.  The I-feron was a little rough (Mostly mental i think- it will cure smoking, eating, and anything you may enjoy!), but i perservered.  If i loose a few more brain cells, I'll just hav't to resign from Mensa !   ha...ho...weep.

Thanks for any advice!   Love All,  Grady & Family.

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janiam's picture
Replies 4
Last reply 2/10/2011 - 7:56pm
Replies by: Jerry from Cape Cod, Amy Busby, Anonymous

We are conducting a global study on malignant Melanoma and seek those diagnosed Stage IIIC or IV that have been treated with medications in the past two years.

The purpose of our study is to understand the full impact of malignant Melanoma on patients and their families, including the physical, emotional and social aspects. The results will assist in developing new treatments in the future.

Interviews are by telephone and web, approximately one hour and may be scheduled between 2/17 and 2/23.

Participants receive $200  and it can be donated if so wished.

Please respond with interest or questions to contacts below.

 

Kind Regards,

Jan Mallery-Groom RN

Clinical Research Support Services

+510-922-9710

jmallery@comcast.net

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jtheisen29's picture
Replies 4
Last reply 2/9/2011 - 5:02pm

Today I am happy to announce that my twin sister who was diagnosed while 5months pregnant with stage 3b on Sept 09 is injecting herself for the last time with interferon. She completed the 1 month of high dose and went on to the 12 month maintance. What a year!!!! Rollercoaster ride would be an understatement! We just had to learn to hold on for the ride!

Although throughout her treatment she was able to maintain a somewhat normal life, she dosen't remember a lot from the early months of having her new born baby. So my prayer for her is that now that she is done that she will be able to thrive and live life to the fullest mentally, physically, spiritually and that the memories she is able to make with her now 1 year old and 7 year old will be the best ever!

So I say GOOD BYE cancer!! Can't say our family will miss you at all. Little did you know that you would bring our family together, make us stronger, you taught  us how to laugh, taught us how to cry and most of all you taught us how to love!!! So cancer even though we hope that you are gone forever, the lesson will remain in our hearts. 

If you could please keep her in your thoughts and prayers her exit scans are Friday... We remain cautiously optimistic about the future and we pray for many more years of being N.E.D!! indecision

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Hello, Ive been visiting this site for almost a decade since I was diagnosed in 2001. I never fail to be amazed by the level of support you provide for each other.I am stage IIIb and have now been NED for seven years. I consider myself to be very lucky indeed and in some ways the last ten years have been the best of my life. I took early retirement when I was diagnosed, I have a wonderful wife, five great kids and six grandchildren (born since my diagnosis). However I am always aware that the cloud of melanoma does not go away and that many people have not been as lucky as I have been up to now.I am taking part in a charity walk to raise money for The Royal Marsden Hospital, where I have recieved outstanding care. If anyone would like to help please go to http://www.justgiving.com/mike-snelle Thankyou!

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adgesoph's picture
Replies 4
Last reply 2/8/2011 - 7:20pm

My dad has stage 1V melanoma (braf positive), just finished up 2 rounds of Interleukin-2 and it didn't work (no real surprise there) so now his doctor is looking into either ipi or PLX4032.  Which one is best?  Pros and Cons?  What would you do if you were in his shoes?   I want to help my dad anyway I can and need to know the ins and outs of all this stuff so we can make the best choice.  Please help!  Thank you!

 

Adrienne

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Terra's picture
Replies 6
Last reply 2/8/2011 - 10:55am

Hi, we have an appointment this week with our oncologist and would like to dicsuss systemic treatments. 

 

My husband is BRAF negative so I am assuming that ipi is the only one - does anyone know of the others?

He had a lung nodule removed in June '10 and a lung node removed in January '11 -we will be having scans soon but I really want to be ready to discuss all and any options with her (most recent scans before surgery showed no other cancer although we have been watching some suspicious spots they have not changed and we don't what they are).

 

Thank so much in advance

Terra

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Jan in OC's picture
Replies 2
Last reply 2/8/2011 - 2:51am

After wearing am "immobilizer" on his arm all weekend, my husband got a bad rash and blisters wherever the sling rubbed.  Don't know if this is an IPI reaction (had first infusion on 1/28) or pain meds or just plain sensitive skin?  Is rash and blistering normal for IPI?  what can he take to help?   The OTC benadryl doesn't seem to be working.  

We saw the orthopedic doc this morning and they put a larger (better) brace on his arm.  The doc wants to wait for 3 weeks until the swelling goes down to decide on surgery due to risk of infection, lymphadema, etc.  In the meantime, he thought there was no reason to delay the MRI and brain radiation, if he can lay still for it.  I have not heard from the RadOnc today, have a call into them.  

One day at a time.....

Jan

laughter is the best medicine

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Anonymous's picture
Anonymous
Replies 0

Thought I would share some information with all of you that might be helpful.  Emory Winship Cancer institute is providing free information to patients and their caregivers on Feb 26th.  To learn more, click on: https://winshipcancer.emory.edu/events/WinshipContentPage.aspx?nd=821&ei...

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lhaley's picture
Replies 11
Last reply 2/7/2011 - 10:20pm

I posted the other day that I had terrible numbers on my blood work. I retook the blood test yesterday and they were greatly improved.  Lesson learned was no erythrimycen and zocur at the same time!!! 

Meanwhile was scheduled for a bilateral mri today. I have never had claustrophobic issues before but today was a disaster. I had to have them pull me out of the machine. They did it differently this time and they basically put my breasts in a vice type of contraption and there was no mirror where I had my head faced down.  As they were moving me back into the tube my feet hit the walls. That was it......  I'm rescheduled in a few weeks at a different institution, maybe it will be done like I used to have it in Myrtle Beach (I would travel for the test but we just rented our house), I think I'll also take something before the test to calm me down.  They told me that it's the only MRI that has you on your stomach.

Cystoscopy on Tuesday and PET/CT the following Tuesday to see what the lung nodule is doing. 

Linda

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Replies by: Fen, KellieSue

Hey all, long time...So I have gotten to my 1 yr anniversary down...and after 2 Pet/CT's I keep getting asked if I have ashma!? So, since 1 month interferon, I have fluid in my lungs and airway constriction.  Anyone else get this?  Did it stay? Is this one of those lifetime side effects that I have been trying to avoid?

And then there is my thyroid.  So the last scan they found something on my thyroid. They (Dr.s) keep telling me they think it is nothing as I go on to the next test.  I have found one article about mel patient who got it in her thyroid...but anyone have thyroid problems after all their treatment?

I am getting a little frustrated. I keep trying to get my body to move on and start getting/feeling healthy. But it seems everytime I get going I get slammed back. And I can't decide how much do I push through and how much a give in.  Any advice is welcome!

Sarah

Stage 3 Mel, NED 1yr

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Sharyn's picture
Replies 18
Last reply 2/7/2011 - 1:52pm

Hi MPIP family,

I was scheduled for SRS on Monday for 2 tumors. However I just got a call from my Dr to say that one of the tumors has grown from 1cm to 4.5cm in 2 months, so it will have to be removed surgically. The other one will be done with SRS. If anone has any experience with brain surgery, could you please share it with me? I am really scared!

Hugs

Sharyn, Stage IV

WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial Mets to brain, lung and sub-qs. Craniotomy.

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Jydnew's picture
Replies 7
Last reply 2/7/2011 - 11:20am

Hi,

Due to the big ol' storm coming through the east, my husband's oncology visit was canceled tomorrow.  But his bloodwork shows that he remains NED.  It was 9 years ago this month that he was diagnosed with Stage IIIA Melanoma - 1.33 mm non-ulcerated primary on the the tricep area of his right arm.  He had microscopic deposits in 1 node, found on sentinal node biopsy.  He had a complete lymphandectomy 6 weeks later  - other nodes were clear.  He did no additional therapies.  He gets a CT scan each year, and semi-annual bloodwork, and semi-annual oncology and dermatology visits.  We are vigilant but don't live in fear.

He was diagnosed a week or so after we returned from our honeymoon in New Orleans, a week after his 26th birthday.  We celebrate 9 years of marriage and 9 years of NED, as well as his 35 and my 33 birthday this month.  It's a good month...

I post an update for him every 6 months because I wanted to see these updates 5, 6,7,8, 9 years ago.

Wishing you all the very best health,

Wendy

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lovingwifedeb's picture
Replies 6
Last reply 2/6/2011 - 9:13pm

After Bob’s brain surgery on January 12th it had been decided that he needed to be treated with Gamma Knife Surgery. This procedure was done on Tuesday, February 1st, it was a long process that started at 6 in the morning and we walked out of there by Noon. In the two weeks after Bob’s brain surgery his tumor had started to regrow and instead of the 1/2 hour of radiation planned his doctor decided to be on the aggressive side and treat him with 2 hours.

As this news was being delivered to me by his doctor the words - “larger after surgery” & “regrowing” kept echoing in my head. Bob was prepped and snoring in his chair ready to be rolled away for his radiation treatment. This whole morning was really frightening to me and so was this news of tumor regrowing and as everyone left the room I couldn’t hold back my tears any longer. I realized that I hadn’t really cried since last summer when I had my meltdown. This treatment was getting the best of me today and I couldn’t sort my feelings in all this craziness. Thinking back on the past weeks... one doctor saying he got all the tumor and removed all lymph nodes, now Bob is cancer free, that was in July. Then a brain tumor being removed with a doctor saying he got “most all” of it, that was in January. Now another doctor saying yes, this time he thinks he will get it all with gamma knife, this is February. We are talking 7 months... yes, I want to believe...

I find my heart tearing apart in my chest and my tears rolling silently down my face as I spent 2 hours waiting for Bob to return to me. I have to wonder would I have what it takes as Bob does to wake up each morning knowing it might not be my best days any longer.  I admire him more and more for the man he is and strives to be. He does not complain because of his diagnosis but strives to do his best with what he has been given.

I hate this cancer with every cell of my being. Since Bob’s diagnosis I have read there are a lot of patients that have learned to be grateful for having cancer. I may be just the caregiver but I feel damn close to the subject of cancer and everything I have learned so far. I am not that grateful yet. I am not sure Bob is there yet either. BUT... I am reaching in places inside myself that I did not know existed and had it not been for Bob’s diagnosis I don’t know if I could have explored myself this deeply if for any other reason. I’m sure I have a long ways to go and I don’t look forward IF this cancer road takes me there.

So, we wait until March 7th for one more test, one more deep breath.

Peace to all.

Deb

lovingwife to Bob, stage 4

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Dawn's picture
Replies 3
Last reply 2/6/2011 - 4:29pm

My nine year old daughter had been doing very well.  She had completed 3 infusions of ipi and things were going great.  However, two weeks ago she suffered a small bleed.  They have done multiple MRI's and cannot see well behind the bleed to see if there is a tumor there for sure or not.  The scans were read and then sent to Sloan Kettering as well.  From my discussions, they believe that they are seeing inflammation on the top of her head area where the cancer is and believe that this looking good.  They also mentioned that the bleed area may have shown slight progression but it has significantly cleared....does that make sense?  She did experience some seizures with the bleed but those are under control and she will be finishing her steroids on Monday.  They are planning on giving her the fourth infusion on Friday of this week.  She is doing well overall.  Her right side is a little weaker but she is regaining strength and mobility.  Also two weeks in the hospital doesn't help that either.  Wondering if anyone else had experienced a bleed while being on ipi?  Or any other thoughts would be helpful.  DawnMarie 

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Anonymous's picture
Anonymous
Replies 2
Last reply 2/6/2011 - 10:01am
Replies by: Anonymous, Janner

HI Everyone,

 

I wanted to post this in hopes of getting some advice and feedback as I'm a very concerened father with a pregnant wife of 12 weeks. In August of this year my wife had a malignant melanoma removed on her arm. After having that removed she went in for her PET scan a few months later and everything came back fine. Is there any effects that could harm my wife being pregnant after having the surgery and PET scan? We have a great oncologist but it all seems to weird to say everything is okay without there being any side effects that could affect her pregnancy after the surgery and PET scan. Any info would be appreciated....

Thanks,

ConcernedDad

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