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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Terra's picture
Replies 8
Last reply 3/10/2011 - 5:20am

Hi, I am sorry I haven't posted much lately, we are so busy, we have a 4 and 2 year old and one due in June (unexpectedly). 

 

My husband Derek was diagnosed at stage 3 in 2001, recurred in 07, finished interferon and radiation in 08, lung surgeries in June 10 and January 11 - today I just found out he has multiple liver mets and microscopic disease in his original scar on his shoulder.  The onc thinks our options are ipi, IL-2, P13K and MEK (in TO), or other chemos. 

I think surgery is out of question now, could anyone help me think - I know liver mets are bad and we have not received any news yet on his chest ct scan, I am sick about the possibility of what the holds. 

 

please provide some advice

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Jim M.'s picture
Replies 5
Last reply 3/10/2011 - 11:09am
Replies by: Sherron, ValinMtl, MaryD, King, lhaley

Hi everyone,

 I just got off the phone with Dr. Weber. He said nothing showed up on the PET Scan! He has no idea why something showed up in the small bowel during the CT Scan (a distended tubular structure filled with soft tissue density) while nothing showed up in the small bowel follow through or the PET Scan. Do you have any ideas?

 Dr. Weber wants me to follow up with a consultation with Dr. Jonathan Zager who did my lymph node dissection. He just wants his opinion.

 As you can imagine I did the shout after getting off the phone and am doing the happy dance! Thanks to all for your support, prayers and kind thoughts.

 Most of all Praise God!

  God Bless,

 Jim M.

 Stage 3C

LND

Radiation

Ipilimumab 4 infusions + vaccines

NED 3 years, 4 months

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heg50heg's picture
Replies 10
Last reply 3/15/2011 - 3:51am

I just got done with my 3rd interferon treatment today. So far it is going about like everyone has warned me about. I get the treatment and first two days the shakes and symptons start to kick in. feel pretty cold and lightheaded. The electric blanket that we bought was definately a good investment. Start feeling bad within two hours. Went in today at 12-15 and got done at 2-45 so I know by 4-30 or 5 I will be in bed. The most worst part so far outside of the major syptons are the headaches I cant seem to shake. It seem as though my eyes ache and in turn causes headaches. Could have went in earlier today but it took me all morning to motivate myself to go again. Hoping this is gonna get a little easier or I will probably have to have someone start pushing me out the door to get to these appointments everyday

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Cookie's picture
Replies 4
Last reply 3/9/2011 - 4:42pm
Replies by: Cookie, MichaelFL, Janner
Have any of you had a corneal transplant (DLEK or DSAEK) since your MM dx? I had a 1.4 Clark's Level IV on my knee in 1995. No WLE, I had a conservative excision. No SNB as it was pretty new at the time. I am still NED with 6 month checkups with my derm and yearly chest x-rays and blood work. I now have Fuchs' Dystrophy and will have to have a corneal (or partial) transplants that will require steroid drops to prevent rejection. I read many years ago about the possibility of the MM returning if you use even over the counter steroid cream. Just wondering if any of you have any info on this.
 
Thanks,
Cookie 

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Barb's picture
Replies 7
Last reply 9/9/2012 - 6:45pm
 
I don't post that often but wanted to share my news. I'm nearly two years NED nad excited about that.

I stopped my treatments early on and  made a few changes which was  prayer and supplements and just wanted to share what I have taken.

I had ulcerated melanoma in right breast one lymph node dected Melanoma so Stage 3a.My dr was never optimist for over a year the Dr. has been watching tumors that developed in my lungs and over time had a new one show up. Well as of Monday all my tumors/Nodules are completely gone she could not explain other than to tell me to keep doing what I'm doing and wanted to share with you. 

 
 
 First when I was first Dx back in June 2009 I went to an Indian Doctor(holist) and these are the first supplements I was given and highly recommended. Look up Poly Mvp(I think that is right)I took it for several months but could not keep up with the cost but people are living a long time with pancreas cancer while taking this supplement. Curry,Pomegrante,agurious which is a mushroom not sure on spelling, there are several more which I still take. Here's a list off the top of my head:)

The past several weeks all I added was the
flaxseed oil and Dora flora(I hate cottage cheese)
added beta gluten

For the last 19 months

I have taken
Suma
Devils Claw
Pomegranate
Garlic Oil
Mushrooms
Potassium
Curcumin and turmeric
Cranbury pills(it helps body fight off all infections.)
I drink 2-4 Tablespoons of OILVE OIL I read up on it
I drink 2 tbs of Vinegar(I try to take as often as I can stand it)helps regulate blood sugars.
Vitamin D.C AND E
Vit B complex
Golden seal
Power enzymes
Aleo Vera
Some I cant spell or pronounce
.

I'm missing about half of what I take and would add more if I could and I hear for some it dosent or hasn't worked but Im very hopeful..
 

 

 

 

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Joyce's picture
Replies 2
Last reply 3/9/2011 - 12:00pm

I used to go by Dick's wife (Dick stage 4) but now I will just go by Joyce. Dick had scans last week and will be 5 years NED in June from stage 4. There is more hope now than ever.  I am just beginning to not think about this awful disease as a part of our lives. I hope and pray the same for all of you.

 

Joyce from MA

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Sharyn's picture
Replies 3
Last reply 3/9/2011 - 9:42am

Hi everyone,

It’s been 16 days since my craniotomy, and even I am amazed at how well I’m feeling. Even my vision has been pretty much totally restored! But I’m still not finished with this tumour. Next Wednesday (March 16) I have to have the tumour bed radiated, using LINAC (linear accelerator) technology, here at the Cancer Centre in St John’s. It’s a form of Stereotactic Radio Surgery (SRS), like the Novalis radiation I had done in Montreal, except instead of a mask, they use a “halo” – a circular contraption that has to be literally screwed into my head. Usually, they use 4 screws, but they don’t want to insert a screw where they did the craniotomy, so they’re only going to use 3 screws on me. First, on Friday, I have to go in to have an MRI of my brain. Then I come back on Wed at 7:30 am, they’ll install the halo, do a CT scan of my brain, and send me off to the Chemo Unit for the day to watch TV, read a book, whatever I want to do. Meanwhile, the doctors will be working on my MRI and CT scan, getting all the beams lined up and calibrated. By 4:00 pm, they’ll be ready to radiate, so I’ll be brought to the radiation room, get a few zaps, and I’ll be done. They’ll remove the halo and send me home. This is a normal procedure following a craniotomy to ensure that any potential cells that may have escaped the knife get zapped with radiation. 

As for Montreal, the drug company that sponsors the trial has agreed for me to have the 24-week CT scan done here, and sent to them for evaluation. I’ll have the CT scan on Friday. If all is well with it, I’m hoping to be back on the ipi treatment by March 24. 

In the meantime, there’s lots happening here at home. Michael has moved out into his own apartment, Mark has taken a job in Fort McMurray 2 wks on and 1 wk off, and Matthew has taken a job in Dubai as chef of the Fairmont Hotel and is getting married in a few weeks. Julie and Justin’s wedding plans are moving along for July 1, Ricky and Katherine are heading to Cancun next week, and Jessie is ¾ through her work term at the Arthritis Society. And of course, we still go to the cabin every weekend. Life is good! 

I’ll let you know if and when the ipi treatment resumes in Montreal for sure.

Hugs

Sharyn 

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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Nebr78's picture
Replies 7
Last reply 3/23/2011 - 4:44am

I have just finished strong radiation on the side of my face and on chest.  Both lumps were about the size of a golf ball.   They are now aboujt the size of a big marble. Lots of side effects, sore throat, very weak, congestion in chest but getting over all of it.

 

I also know I have a lump inside my lung and possibly one on spleen.

Can anyone tell me what it may feel like when the lump in the lung gets so large that it disturbs things??  Please.

I  am the one that has had heart disease for over 40 yrs so know I won't last too long.

I have been to several doctors and all they will tell me is it might do this, or do that, or do nothing. I am so  disturbed about the answers I get from Cancer Doctors.   Which is bacisically nothing.  I  am a 79 yr. old male.  I give no hope whatsoever about any kind of a cure.  Big business.

It gets harder to deal with each day. People at cancer centers just try to make you feel good about dying.  I can't accept.that.

Anyone who thinks they may know some kind of answer about my question, I will appreciate a reply.   Thanks

Retired in Nebraska

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Cancer Sucks

What else do you tell yourself when naked fear once again seeps inside your bones and curls around your heart to hang on for dear life, Cancer Sucks. Driving home Bob and I become lost in our own thoughts, each trying to catch our breath with the news given at his doctor’s appointment. I notice tears falling slowly against my husband’s cheek as he tries to compose himself, my heart is breaking. We are both in shock once more and losing control in our life has become familiar ground. Talk of summer vacation this week has slowly disappeared in the background as we come to grips as our reality swiftly changes not knowing what our future may bring us.

In only 30 days 2 new lesions have appeared by Bob’s left eye. The melanoma cells have traveled from the tumor bed site that he recently had surgery on in January and gamma knife in February. The cells left there and have traveled in the lining of his brain (meninges) and have settled around his left eye becoming large enough for the MRI to detect. The doctor has recommended Whole Brain Radiation, 5 minutes per day/15 days. It’s the only way to treat the whole lining of the brain and for any melanoma cells that could be located anywhere else in his brain.

Radiation kills the bad cells and good cells, we know this... some memory loss, loss of his white hair and it will make him tired. He will start by Thursday end of day. Bob is getting headaches more often now and has difficulty sometimes with speaking, he is still working.

Also, I ask of those who are on this discussion board and know of WBR and have gone through it themselves to please add to this thread. My husband could use the support as this has shaken him badly. I do appreciate it and whatever words of encouragement you can give we certainly will appreciate it.

Thank you.

Please keep Bob close to your hearts in the following weeks.

Peace to all.

lovingwife to Bob, stage 4
Deb

If you would like to contact Bob
bob.rogers2010.gmail.com

If you would like to contact our family blog site:
http://redesign08.blogspot.com/

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ComfortZone's picture
Replies 3
Last reply 3/10/2011 - 12:28pm

Hello! This is my first post amongst all you people of such beautiful energy! Surely, the first of many, considering how grateful I am for all of your inspiring, educational, and deeply connecting words I have been reading over the past six months. What took me so long to finally post, right?

Dad is the patient, and his stats are below. I have a bucket load of questions, but I’ll start with this: Can Dad be treated with Ipi while he's receiving brain radiation treatment, without any waiting period in between or requirement to stop one before starting the other?

We realize that often there is a requested waiting period between radiation treatment ending and Ipi starting according to clinical trial protocols, but since he would be receiving it based on compassionate use, are the clinics required to treat him in accordance with those protocols? It clearly makes sense for clinical trial purposes to have the grace period, but it seems to me that for compassionate use, the waiting has significantly different relevance.

Anyone out there been treated with Ipi infusions while undergoing SRS or WBR, or at least not been required to wait the 14 to 28 day waiting period? Is this the doctor’s decision, or are the clinics under restriction from a compassionate use rule system?

Dad: 81 years old, relatively healthy prior to melanoma, aside from low-grade non-hodgkins lymphoma; stage 4, mets to liver first, then brain; Kaiser patient, temador for one month, little-to-no effect on liver lesions, blood platelets fell to risky level, (platelets eventually increased to safe level); blood clots in lung, as byproduct of melanoma; no prior history of cardiovascular or pulmonary challenges; pursuing compassionate use Ipi, failed B-Raf mutation test; most likely beginning brain radiation treatment this week; hopefully SRS, but possibly WBR.

Thank you! And I'm really looking forward to contributing to this amazingly supportive community!

CZ

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Bugandi's picture
Replies 7
Last reply 3/9/2011 - 9:56pm
Replies by: Lisa - Aust, Anonymous, KellieSue, dawn dion, Bugandi

Hi,

I have been on the GSK BRAF/Mek trial for 8 weeks now, and go for my first ct scan tomorrow.   Hoping and Praying for good results.  So far, the trial as been ok, but some of the side effects have gotten me.  Extreme joint pain in my feet and hands.  Taking oxycodone for it, which leaves me fatigued.  Otherwise, very few other side effects.  Anyway, wish me luck.

B

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I was diagnosed in November of 2010 with a 6mm Melanoma on the inside left thigh.  Since then I have had the wide excision and sentinel node  biopsy in December 2010.  One of three nodes had microscopic cancer cells which prompted the superficial groin excision in February.  Thankfully all nodes were clear.  

 

So I still have three drains in and will likely not be ready for the next step until late April or May.  I am presuming it will be Interferon but since I am a 3A with the larger tumor , I am not sure.

 

Just looking for advice to boost immune system or what preparation I can do now while I am waiting for the next step to begin.

"Hope is the only antidote for fear" Lance Armstrong

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Newmom's picture
Replies 13
Last reply 4/25/2011 - 1:16pm
Replies by: Janner, Newmom, lhaley, Ranisa, Anonymous

I was diagnosed in 7-2005 with Melanoma on the back (0.25MM - Stage 1A, Clark level 2) three months after I gave birth to my daughter.  My 2nd daughter was born in June the following year.  Last night I noticed that a mole on my 2nd daughter’s butt (she had it since she was a baby) has changed in color and immediately took her to my dermatologist this morning to have it biopsied.  The doctor said that 2 new moles have grown on top of the existing mole so the color is different but thinks it is a good idea to have it biopsied.  In event, I am freaking out and lot of unpleasant memories came back … I googled and it appears that pediatric melanoma is rare and extremely unpredictable … sorry but I just need to vent a little … any thoughts?  The doctor said the result will come back in a week … I don’t know how I am going to survive this week …         

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glewis923's picture
Replies 14
Last reply 3/10/2011 - 7:05pm

Hello from Hoboken, GA:  After 1 wk. SRS then 2 wks. WBrainRad,  I'm now offically on Ipilimumab (IPI).  Started last Thursday, less than week after WBR. and feeling quite well under circumstances.  Questions on IPI:

1- How long did it take for you to "present" any side effects..? 

2- Took bath last night and started itching around waistline, upper thighs;   stopped after I cooled off;  IPI ??

3- Is it really true that showing some side effects "means its working"?

 

Thanks for any input.  Love, Grady.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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hi,

This is very minor issue, but was curious.  I have been off of interferon for year and a half.  My cholesterol was normal before interferon, but since doing interferon it has been high.  I hoped a year after being done with interferon I would see cholesterol go down, but instead it has gone waaaay up.  I have spent past year eating low fat, no carb, healthy diet, exercise daily blah blah blah haha do all that I am supposed to but it has gone from over 200 to now over 300.  I wondered has anyone else found that the interferon did this? I would like to blame it on that, doctor pushing me to go on medication but I am trying not to, but seems I have going to have to. 

thanks laurie from maine

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