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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wlibby2020's picture
Replies 1
Last reply 9/4/2012 - 10:57pm
Replies by: jag

Since my stage 4 diagnosis 2 years ago I've developed an allergy to contact with chlorhexidine and I believe it is somehow related to one of my treatment protocols and am hoping to see if others have experienced same.

Chlorhexidine is an antibacterial in products like Surgiprep and Hibiclens and even gym wipes as well as mouthwash at the dentist.  The allergic reaction ranges from severe contact dermatitis to anaphalactic shock.  It's a rare allergy but a severe one requiring epi-pens, medical tags, etc.

I've never had an allergy before I had treatment and the way chlorhexidine works seems to be somewhat related to melanoma treatment, but I cannot find solid evidence connecting the two.

I've had biochemo and TIL (t-cell therapy) at MD Anderson before I developed it and am currently in BRAF&MEK clinical trial at Moffit.

The first time I had a reaction was a cleaning kit for PICC line, second time was a surgery prep and last time was said gym wipes.

This may have nothing to do with melanoma treatments and be a one-off, but it is a pretty severe allergy so if anyone has also developed it we may be able to spread the word.

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Jin's picture
Replies 4
Last reply 9/4/2012 - 7:59pm
Replies by: Jin, BrianP, deardad

Hello to all you incredible folks.  I've been reading this blog since my husband, Chris, was diagnosed with Stage 4 Mel in Jan. 2011. You all have been an inspiration and huge support in our journey.  So, I thank you and thank you.

Chris's journey started with a visit to the emergency room followed by a craniotomy for a bleeding brain tumor.  This was the first we know he had cancer.  He was lucky enough to get on a GSK Braf Inhibitor trial at UCSF in April 2011.  Everything looked good for a year and then in April 2012, his scans showed progression in both the brain and the body.  He had Gamma Knife to treat the brain mets in May.  Also went on Zelboraf and Yervoy In May.  Brain MRI in July showed two (out of 14) of the mets treated with gamma had progressed and there were four tiny new mets in his brain.  We chose to have no steroids and no treatment of his brain as that would almost certainly require steroids too.  We crossed our fingers and hoped the Yervoy would work.  Chris is due to have another MRI of his brain this friday.  Based on the subcus we can feel, it doesn't appear to be working.  We've talked to everyone we can think of but can't any PD-1 or PDL-1 or Adoptive Cell Transfer that will allow him on if he has active brain mets. 

Does anyone know of anything?  His oncologist is recommending whole brain radiation followed by a gamma knife "boost" in the hope that that will give him 8 wks of brain stability.  Everything we've read or hear about whole brain would indicate that whole brain is going to have significant and permanent neurological side effects.  Chris is 61, in great health other than the melanoma, and we'd love to have some option other than whole brain radiation.

Any ideas would be much appreciated.

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Ali's picture
Replies 11
Last reply 9/5/2012 - 1:58am

Just wanted to put out a quick update. 

In June, after completing 6 weeks of high dose IL-2 (with some amazing but mixed results), they found 25 brain mets and many others scattered around.  I could feel 12 underneath the skin.  One dose of IPI, developed colitis just 5 days into treatment, also felt the tumors shrinking that quickly.  I have not been able to do IPI again yet, just had a colonoscopy that still shows inflammation.  The tumors I can feel have continued to shrink and disappear, and can now feel only one little tiny one on my rib. 

Hoping this kind of response is happening in the brain!!!  I get the 12-week-after-IPI scans in one week.  Anxiety!  Thanks for all the triumphant stories I read today, they are going to get me through the week. 

Good luck to all!

p.s.  No symptoms of brain involvement.  Not so much as a headache.  I feel 100% and have started to run again.  This is good, yes?

 

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rosa1's picture
Replies 6
Last reply 9/5/2012 - 9:38pm

Hi everyone, I have been reading these boards for a long time but never posted before.  I initially had some hesitation posting my story, since many on these boards are having really rough times,  but finally I decided today to share my good news with the rest of you, as to give hope that we all need! Please read my profile to get my story.  On Friday, 24 August 2012, I went to Moffitt in Tampa to do the prescreening for the PD-1 clinical trial that doctor Weber suggested me to join.  I did brain MRI, blood work, CT of the neck, chest, abdomen and pelvis.  End of the day, I met with Dr. Weber to go over the consent and the first thing he said when he came in the room was "I want you to read something my nurse wrote for me".  He showed me a yellow sticky note on top of my CT report that read" Hmm!?, no disease?"  When I read that I was in disbielief.  I did not know what to say except "Are you sure?"  He told me that the only thing visible on the scan was the scar left behind from the SRS.  His clinical impression of the disease was complete response/no evidence of disease.   i was in shock! 

I was ineligible to go on the trial as I no longer have a measurable disease.  Dr. Weber is advising a repeat scan in 3 months.

God is good!

All things are possible through God!

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dellriol's picture
Replies 1
Last reply 9/3/2012 - 2:00pm
Replies by: aldakota22

In February, I had a brain met that hemorrhaged. That's how I found out I had progressed to Stage 4.   I had lost use of my right arm and leg by the time surgery could be done.  I went through rehab and regained use and nearly full function.  Then started Zelboraf.  Now, I have pain in the arm that was paralyzed.  The hand is swollen and I can't close it to a fist, the shoulder spasms and shoots pain when I extend my arm or try to pull on things (like  closing the car door) and I am back in therapy trying to get use back.  Has anyone else had similar symptoms, either with the brain surgery or with the Zelboraf?   

This ain't no hill for a stepper.

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natasha's picture
Replies 17
Last reply 9/5/2012 - 2:05pm

Hi dear friends!!!

    Sorry for my silly question,but - can I use sauna or steam rooms with my melanoma diagnosys.

It really helps my bad back ,but my friennd told me it can be dangerous for me.

Can anyone give me some advice ,please?

Thank you very much

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Gene_S's picture
Replies 1
Last reply 9/3/2012 - 11:09am
Replies by: Anonymous
 
Excellent video for those of us who want to learn about some of the causes of our disease, and possibly for some help in fighting it.
 
Best wishes, Gene

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

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Anonymous's picture
Anonymous
Replies 5
Last reply 9/3/2012 - 2:23pm
Replies by: Anonymous, LynnLuc, lhaley

Hi,

I am new here and been reading all the post. Thank you for posting the wealth of information.

I have been reading posts about MRI & scans for trials that people are having.

I found out something interesting this week. I have  3month  scans which are: BRAIN MRI, CT Neck, Chest, Abdomen & Pelvis.

 For many years, I was having CT brain/head scans because I am EXTREMELYClaustrophobic. However, one of my doctors convinced me that radiation from the CT  brain/head was not good for me and that I should switch to Brain MRI . So for a few years, I have been having Brain MRI's replacing the CT brain/head scans.

Six months ago, I started a trial that required scans of head, neck, chest, abdomen & pelvis. So I have been having BRAIN MRI, and CT neck, chest, abdomen & pelvis.

This week I saw my scan images and when they did my  CT neck , they also scanned my head.  I am very  upset that my head is being scanned getting radiation and no one tells you. The scan report by the radiologist does not read the head images so you would not know the head is scanned when they do a CT neck

I was under the impression that a neck could be scanned alone without the head. Does anyone know if the neck can be scanned without the head or does the head have to be scanned to get the full neck images??? Has anyone seen their images who have their neck scanned and the head was not scanned at the same time??? Obviously, my preference would be to continue to have BRAIN MRI and ONLY my NECK be scannned without my head.

Radiation/scans are a necessary evil for cancer patients but why not try to reduce the amount we get if we can!

Thank you for taking the time to read my post. I sincerely appreiate your imput about your CT neck scans.

Tommy

 

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Kelly7's picture
Replies 7
Last reply 9/3/2012 - 11:37pm
Replies by: Ali, NYKaren, Anonymous, LynnLuc

About 6 weeks after his las Yervoy injection my brother developed severe diarrhea and stomach pain. Took the doctors 4 weeks to properly diagnose his colitis. 35 lbs later, not being able to work, and deathly ill,  now, he is in the hospital on an IV of Hydrocortisone 100mg- IS the RIGHT drug???

He is also receiving morphine for pain, however, he is still in pain. Has this happened to anyone else before? If so, besides the steroid, what pain meds did they give you?

Thank you,

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Anonymous's picture
Replies 12
Last reply 9/4/2012 - 8:50pm
Replies by: Harry in Fair Oaks, rbruce, Gene_S, LynnLuc, Anonymous

Hi All,

I am new to the board. I feel very lucky I found you all.

I am wondering what parts of the body are required to be scanned for clinical trials. Is it required for trials to scan from head to toe???

I am in  Merck PD1 clinical trial and have scans every 12 weeks.  These are the scans I am getting: MRI Brain, CT Neck, Ct Chest, CT Abdomen & Pelvis, plus lower extremties because in the past, I had tumors in my left leg, lungs, and on chest. Recently, just became NED. 

I would appreciate you sharing what trial/and or sponsor of the trial and what scans are you required to have??

Thank so much for replying to my post.

God Bless you all.

Marybelle

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Here is the link to an article i read where mice that had been injected with melanoma were also injected with viagra, and those mice who got the viagra lived twice as long as the mice who didn't, because viagra has immune boosting effect.  Check out the article, let me know what you guys think?

http://www.myhealthnewsdaily.com/1952-cancer-fighting-cells-boost-viagra...
 

"Give thanks in all circumstances"

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Anonymous's picture
Anonymous
Replies 7
Last reply 9/5/2012 - 6:36am
Replies by: Anonymous, dellriol, jmmm, john partrick michael murphy

How much increased risk for other future cancers do CT scans create due to radiation exposure?  Is it really true that one CT scan is like 500 x rays?

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rbruce's picture
Replies 17
Last reply 2/15/2014 - 4:02pm

Just got results from my 24 week pet/ct scans. Continued shrinkage! Lung tomors are down about 60% from where I started, axillary lymph node is about 50%, and they couldnt find any activity in my 2 previously noted rib mets!!!!! Dr. said I had best results so far of 7 on the trial and although he didnt test for it, he's sure my tumors expressed the pd ligand. Everyday I read about warriors beating the odds and of ever increasing new research and findings. I have faith that soon, melanoma will be history. Keep the faith qnd God Bless.  Robert

The circumstances of our lives have as much power as we choose to give them. David McNally

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Anonymous's picture
Replies 7
Last reply 9/4/2012 - 12:43am
Replies by: Janner, chalknpens, Anonymous

Curious.  Shopping around for new derm.  Found one I like but she reads her own pathology, and sends out for stains if necessary.  Thought that was odd.  Is that ok?  She is a teaching Derm with research part of her practice that has med students - but not associated with any major hospital that  I know of?

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mama1960's picture
Replies 3
Last reply 8/31/2012 - 3:58pm
Replies by: mama1960, Anonymous, awillett1991

Well, I saw the surgeon yesterday regarding node dissection surgery....no doctor in Abilene, Tx has ever done it. So the oncologist is trying to find out where I need to go. Possible Dallas/Ft. Worth, possible MD Anderson. More headaches either way. I feel like there are so many different things to worry about, I don't even know what to focus on. There is the expense end of everything. How long will I be out of work? I only have 10 days paid. How much money will hospital and surgeon want up front?  The actual surgery, recovery, pain, etc. Then after all that, radiation.

It is what it is.

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