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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nickmac56's picture
Replies 8
Last reply 11/3/2011 - 3:18am

They've been pumping my wife full of blood and platelets and her counts are on the way up so she should be able to have surgery today at 2pm to put in a shunt to relieve the pressure in her brain. This is a good example of how one treatment (chemo) can hinder another (surgery). The neurosurgeon is very concerned about bleeding and since the chemo (Abraxane) she's been on for the last two weeks has driven her bloodcounts down her ability to clot is compromised. The steroids she is on are a problem too, I did not know that steroids make wound healing difficult.

That's another reason they don't want to start any treatment for at least ten days after the surgery. They want the head incision site to heal, brain infection is not good. Our doc has ruled out the direct chemo to the brain. The neurosurgeon concurs. So that's four professionals saying no to it. I concur. I researched it a lot yesterday and there is no evidence it has any effect against melanoma, and it has large toxicity issues. Her best bet for buying some time is whole brain radiation, but we will hold off making that decision until ten days after surgery. If she elects to do it, it should shrink the cancer in her brain, which is significant according to the scans. Not just the two solid tumors but extensive coating. Since the cancer is in her spinal and brain fluid it will no doubt re-seed in the brain, at which point nothing more can be done since you only do whole brain once. At least the shunt will be in place so as fluid and pressure builds again there is a relief valve.

It's also possible that in ten days she decides she doesn't want to do the whole brain because of it's side effects. Or that she may not be able to because of her compromised condition. Right now she is focusing on a date - she wants to make it through the holidays. My goal is to get her home, and except for trips to the radiation treatment and doctor, never come back to the hospital again. She wants to be surrounded by friends and our boys and dogs. It also means I have to make accommodations in our house for a wheelchair - a ramp and bathroom accessibility. As well as line up visiting nurse and future hospice support. All while making our house festive for the holidays.

Being a caregiver is tough.

Nick

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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dawn dion's picture
Replies 11
Last reply 11/3/2011 - 6:45am

Hi all

I haven't posted here in a while because there has been nothing to talk about - been doing BRAF/MEK since march 2011 and as of today we (drs. and I) have decided that it is no longer working.  The one spot I have has started to grow again albeit slowly after shrinking over 70%.  Discussing many options on the table among them being IL2.     This is a option I considered doing before BRAF/MEK and I am once again thinking about.  I know there are lots of you out there with experience so I am looking to you to learn.   I remember that one of you has a great list of what to do and bring with you to the hospital when doing IL2 - would appreciate being pointed in that direction.   I won't be doing this until after the beginning of the year so if anyone else has any suggestions other than ipi (been there done that) also greatly appreciated.

Hugs and Smiles to all

Dawn

 

 

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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lhaley's picture
Replies 6
Last reply 11/2/2011 - 11:24pm

Earlier in the week they had tried to further wean the steroids.  At one point I had to have my husband hold my hand for me to walk, they had tried to quickly to wean me off.   So then I was feeling better when Sat night the headache started. I felt as if someone had also punched me in the teeth and sinus - like it started originally.   Sunday morning I knew I had to call the DR.  

The MRI showed no change since the 10TH!!   While I would have like to see it shrink (SRS 2 weeks earlier) I knew it was still early. But no bleeding and no growth. The other 2 scans had shown 1cm bleed before so now to us that was good news.

The nuerosurgeon has scheduled the next MRI on the 21st. Will talk after the MRI and decide if he will immediately do the crainectomy - he said that to him there must be some shrinkage at that point.    This will just be a few days before Thanksgiving. I sure do hope that will be home and cooking dinner because will have had a beginning response!

They are keeping me 1/2 of a tablet in am and 1/2 in the pm. They are waiting another week before we try to lower the level a little.  Meanwhile I was told that no headache is acceptable.  That is gone but still  having some teeth issue.  I think I now have added some sores in the mouth and this has added.  

Feel pretty good today, and hope this continues!

Linda

http://www.caringbridge.org/visit/lindahaley

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Anonymous's picture
Anonymous
Replies 16
Last reply 11/4/2011 - 8:27am

We have an opportunity to participate in a clinical trial--ipi v. interferon.

We decided before knowing we could be in a trial that we don't want interferon, but we want to do something. From all of the research we have done, including this blog, first and second medical opinions, friends and family we made a decision. We think/hope that ipi gives us the best chance.

Clearly, it is our right to change our mind at anytime. The informed consent form makes it clear in bold letters on the front page. But since we have already made our decision, is it right. One doctor acquintance says he'd do it in a heartbeat, the clinical trial NP made it clear we needed to commit, and stick to the groundrules--Arm A or Arm B.

Life or death, black or white or gray. Right or wrong. What would you do if you were making the decision for your kid?

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Lisa13's picture
Replies 11
Last reply 11/2/2011 - 11:14am

I received a call from my Dr. today telling me that the majority of lung mets in my lungs have all shrunk - except for 1 or 2 which have grown a bit.  This could be inflammation, but believes I'm responding to ipi.  Anyway, here is some potential bad news - something was found in my brain - 2.2 sonometers which he said was very small. Also, he said it doesn't look like a typical melanoma and they don't exactly know what it is, so they're sending me in for an MRI.   I'm very nervous and scared, but until I know for sure, I'm going to hope and pray this is benign or a pituitary gland tumour from ipi.   If it's something, I can have it treated ASAP. 

Anyway, has anybody had anything similar before?  I just had an MRI of my brain in August and there was nothing and now while on ipi, I've got something.  I'll know more tomorrow when I see him - speaking to him on the phone while driving home from a mall was very mindblowing to say the least.

Anyway, the fact that almost all 15 mets have shrunk in my lungs is VERY good news to me and I still continue to have faith!

Lisa 

Many impossible things have been accomplished for those who refuse to quit

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Jim M.'s picture
Replies 7
Last reply 11/2/2011 - 11:17am

Four years ago today Dr. Jonathan Zager and his Moffitt team took the MM tumor out of me along with my lymph nodes. My recent Ct scan was negative. Can't say I've missed you MM but you have taught me alot!

 Thank you Lord for so many blessings including the wonderful medical team you led me to, the support on this board, my wife, our 2 children, the work you have given me to do ( a positive parenting program which prevents child abuse and neglect), each day of living and breathing AND other blessings I have received from having melanoma.

Eventhough I know few people here face to face you are all in my prayers for healing, strength, perseverance, guidance, love and peace to face each day. These are the qualities you have shown me and role modeled for me. I am greatly indebted to you.

God Bless,

 Jim M.

 Stage 3C

LND:11/1/07, radiation (30 tx), Yervoy (Ipilimumab at that time) with vaccines: 3/08-10/08, on-going hormone replacement for pituitary side effect, lymphedema in right arm

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Lisa13's picture
Replies 12
Last reply 11/1/2011 - 3:42pm

My scans were yesterday and results tomorrow after Yervoy treatment.  I'm incredibly nervous, but I also remain quite hopeful.  I've had a great few days - celebrated my daughter's 2nd birthday, went trick or treating with her and also went for a jog and felt wonderful. I was diagnosed 6 months with Stage 4 in my lungs and here I am jogging without feeling anything.

The fact that I feel pretty darn good has to say something, so I truly hope that all my wishes and prayers get me some good news tomorrow.

Lisa

Many impossible things have been accomplished for those who refuse to quit

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TracyLee's picture
Replies 16
Last reply 11/1/2011 - 9:51pm

Hi y'all,

Today is my birthday. Every milestone is reason to celebrate, with melanoma. Birthdays, anniversaries, first days of school, kids learning to drive, school performances. I'm just happy to be here to see them.

To those who are in a bad place, I lift you in prayer. To those who are responding well, or even better, NED, hooray!

I can walk, feed myself, hug my kids and husband, and work. I have nothing to complain about, and much to rejoice about!

Life is not perfect. I'm still stage IV. Still have painful arthritis from Zelboraf. Hair is still thinning, along with my brows and eyelashes.

But I AM HERE TO CELEBRATE! What more is there to say?

TracyLee

Stage IV May 2011

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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Kim41's picture
Replies 2
Last reply 11/30/2011 - 11:43am
Replies by: Kim41

Newly diagnosed september 2011 with 1,3 breslow, clarks IV nodular spitzoid type melanoma on left thigh. Started as red ugly bump and had it for about 2yrs. Had Wide excision of left leg and SNB that came back positive for 1 node. Just received call today from nurse that node was positve but on friday she told me nodes were negative. So we told family and friends that things looked good. What questions should I ask. I live in lewistown PA and had surgery at Danville GMC. Not sure if of closest melanoma specialists. I did see that they have a melanoma center at Penn state Hershey Mecical center. Just wandering if thats a good place to go. Any info would be greatly appreciated.

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Kim41's picture
Replies 12
Last reply 11/1/2011 - 5:08pm

Newly diagnosed september 2011 with 1,3 breslow, clarks IV nodular spitzoid type melanoma on left thigh. Started as red ugly bump and had it for about 2yrs. Had Wide excision of left leg and SNB that came back positive for 1 node. Just received call today from nurse that node was positve but on friday she told me nodes were negative. So we told family and friends that things looked good. What questions should I ask. I live in lewistown PA and had surgery at Danville GMC. Not sure if of closest melanoma specialists. I did see that they have a melanoma center at Penn state Hershey Mecical center. Just wandering if thats a good place to go. Any info would be greatly appreciated.

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cwu's picture
Replies 2
Last reply 11/1/2011 - 2:49pm
Replies by: cwu, FormerCaregiver

Today was not a good day for dad. Today is his 7th week and his ALC number went down. It was 1.58 berfore Yervoy, 1.98 at week 4, and today (week 7) was 1.5.  I know that ALC is a good marker for responders and it should double by week 7 so this is not good news. Is there anyone out there who had ALC number drop during Yervoy and still end up being a responder? How accurate is ALC as a marker? His oncologist was pessimistic today at his appointment, he said that he didnt feel that it is working as dad's lesions have gotten bigger and more have grown and he didnt see any improvements. But he recommended dad to finish the third and fourth dose. Dad got his third dose today.  I feel so hopeless and dont know what to believe.

Any advice is appreciated.  Thanks for your help.

Chau

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LynnLuc's picture
Replies 2
Last reply 11/1/2011 - 5:23pm
Replies by: sharmon, mombase

I am going to go to the 2011 Melanoma Congress, just for Friday and for some sessions on Saturday  ...couldn't afford it but I happen to have an angel in my court (and at Moffitt) who pulled some strings!  http://www.melanoma2011.com/   Lynn

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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jmmm's picture
Replies 7
Last reply 11/1/2011 - 10:36pm

How do other caregivers do it? My 38 year old husband has stage 4. Mets throughout his body and a huge, inoperable ( for now) brain tumor. I am trying to juggle all his needs and appointments and caring for our 3 boys (ages 7, 9, & 11). I have help from grandparents, but most of the time all my husband wants is me, same for the boys. Not to mention the laundry, cleaning, keeping up with homework, and all the normal every day things of running a house of 5. Any advice on juggling it all?

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heg50heg's picture
Replies 1
Last reply 10/31/2011 - 10:22pm
Replies by: LynnLuc

Can just having a chest exray done detect melanoma spread in the body. After completing the chest exray today the technician ask me if I had a cough lately and I said no. She then ask me where I had melanoma at and I informed her it was on my arm and that I had it removed. I ask her if the xray looked good and she said she did not have acess to previos exrays to compare them. Just her asking the question she did made me nervous and that is why I was wondering if melanoma spots show up on regular exrays. Will be nervous now untill I talk to my Dr. on wed. again.

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Theresa123's picture
Replies 13
Last reply 11/2/2011 - 2:26am

Hi, I am new to the forum.  I have Stage 4 melanoma, and I am on my second go round with Yervoy.  I am getting more tumors, but the one causing the most trouble is in my stomach/intestine.  It is next to my aorta and vena cava, and the surgeon says it is risky to take out, but if he doesn't I could have complete blockage.  Has anyone else had this problem?

I am scared and angry.  I have had melanoma for 2 years, and have had so many problems.  I am getting tired of fighting.  The thought of peritonitis from a exploding bowel is not the way I want to go, however.

Thanks!!!

Every day is a miracle.

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