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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Snickers60's picture
Replies 3
Last reply 6/27/2013 - 9:55am
Replies by: Tina D, Owl, aldakota22

Hello - long time no talk..............   

I wanted to give you a quick update on Wayne  - especially for those on ZEL ! 

Last Thursday was a devastating day for Wayne and me.   We learned that while Zel is still working great on his body - (still clean one year later) - he had 2 brain mets and a meningioma (benign)    They will be doing Gamma Knife next Friday - the 28th at MDA !    To say that learning this news the day before Wayne's one year NED mark was hard is an understatement.   As many of you know, learning you have brain mets is a different and devastating kind of animal.  However, we are beginning to get our berrings, put our gloves back on, and FIGHT this beast like never before.  We head back next Thursday for the surgery.  

We were planning on going out to dinner THAT night to celebrate the ONE YEAR NED MARK !    :-((((((   How sad is that.......yes, it was SAD !   I cried my eyeballs out for days instead. 

They are talking about possibly trying him on Temodar, WITH the ZEL, after the Gamma Knife.

All prayers would be much appreciated.

Nancy (devoted wife of 3 X Warrior Wayne) 

We are anxious to hear from Dick_K ?    Anyone heard from him lately ?   

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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aldakota22's picture
Replies 16
Last reply 6/27/2013 - 10:00am

Had visit with Dr. Anna Pavlick yesterday and got results of Cat Scans & MRI  from 6/15/13.On the plus side Iron count is back to normal after being on the low side early this year.Just had to  take iron supplement..Also gained 4 pounds .First time in over 2 years after remaining at same weight.Appetite has always been great.All in all the results were awesome."Z" has been doing its job for the most part as there is no evidence of disease from the head down.Still have a few brain mets with the largest being  1.2 x 1.1  x  0.4  cm. All others are substancially smaller and measured in mm.They all remain stable when compared to MRI of  2/20/13 and  4/13/13. No new ones from MRI of Feb. 2013.Will have MRI again in two months. As i have no problems stemming from these mets she is of the opinion that this is something I can actually live with.Feels that any  Gamma knife treatment at this point is not reccomended.Still taking "Z" for over 21 months.Plan  B if needed will be to switch to Dabrafenib expected to be available the first week of July.Known to  work as a effective a "Z" to long time users as myself.Want everyone to know out there that after what felt like a Death Sentence  in early 2011, now feels  with God  & modern medicine I now have a Life Sentence.To all my fellow warriors in our unwanted battle with melanoma do everything you can to Beat the Beast..The research is advancing toward a cure or at least a treatment as a chronic condition.Life is good.Keeping all my fellow warriors in my prayers.Looking forward when all posts here will be ones of hope and happiness.I feel my good results have been cause of God, modern medicine, my PMA and of course the love and support of my honey and family. Also know that all here are wishing me well also. Thank you.      Al

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Hi,
My father who (has stage 4) has just had his first dose of treatment in a PD-1 vs. Dacarbazine clinical trial sponsored by BMS. He reports that he is feeling relatively good after the first round and hasn't noticed any side effects as yet.

During his first round of treatment there were two sessions, the first one he either received placebo/ pd-1 med, and the second one he either received placebo / Dacarbazine. During the first session he felt a sensation down his right leg which lasted throughout the administration time and could taste a slight sweetness. During the second round (2 hours later) he felt a slight pressure when the drug was administered but this didn't last very long. At the end of the entire session we noticed his veins near the site of injection had swelled slightly, but this disappeared shortly after ice was applied.

We were wondering if there are any signs that could indicate which treatment he could be receiving. I've heard and read that Dacarbazine causes arm pain during treatment and after- does anyone know if this is relatively common, whether the sensation during treatment is obvious and whether these effects occur even during the first treatment?

Unfortunately the side effects for both treatments are relatively similar so it would be good to get an insight on what others may have experienced. At the end if the day, we just hope whatever he receives is going to help him.

Thanks for reading,
Julia

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flvermonter's picture
Replies 6
Last reply 6/20/2013 - 4:37pm

We meet with Dr Zager on Monday, but I saw the test results on the Moffitt web site.  I need help understanding and in hopes you can help explain to me.

This is from the last surgery to remove the rest of the lymph nodes on my husband's right side.  I think this is good news, but do not know.

It reads tha the BRAF result is "Not Detected"

The BRAF Interpretation - No point mutation is identified in BRAF gene, codon 600.  This assay uses pyrosequencing technology, targeting BRAF utations on codon  yoo.  A negative result indicates that no mutation is identified in these targeted areas with a sensitivity of 5%.  The test covers  over 95% of known BRAF mutations with a specificity of 100% during validation against the V600E results.

 

Thanks, Mary

 

Hugs to all, patients and care givers.

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jP85's picture
Replies 5
Last reply 6/27/2013 - 10:04am

I've had three doses of ipi and now have colitis and not likely to get the final dose. Just wondered if anyone had any positive news about how the treatment had worked for them even if not able to complete the course.

Bit of background. I'm 28. I have tumours in my brain (40), liver, lungs, ovary, spine, abdominal wall. I have had lots of bruising and inflammation whilst taking ipi and have lots of haematomas all over my chest area. I haven't had complete scans yet whilst on ipi but was supposed to have gamma knife to 5-10 brain mets after round 1 and once the frame was fitted they found 40 so I ended up having wbr instead alongside ipi....its been a long few weeks and been pretty much in bed since. Got scans in the next couple of weeks.

Thanks

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I've had three doses of ipi and now have colitis and not likely to get the final dose. Just wondered if anyone had any positive news about how the treatment had worked for them even if not able to complete the course.

Bit of background. I'm 28. I have tumours in my brain (40), liver, lungs, ovary, spine, abdominal wall. I have had lots of bruising and inflammation whilst taking ipi and have lots of haematomas all over my chest area. I haven't had complete scans yet whilst on ipi but was supposed to have gamma knife to 5-10 brain mets after round 1 and once the frame was fitted they found 40 so I ended up having wbr instead alongside ipi....its been a long few weeks and been pretty much in bed since. Got scans in the next couple of weeks.

Thanks

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Who_am_i's picture
Replies 3
Last reply 6/19/2013 - 10:09pm
Replies by: Janner, Who_am_i, SABKLYN

Tomorrow is my WLE and SNB, about how long will it take for the results?
Thanks,
Patti

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AstraZeneca's experimental drug, selumetinib, is the first targeted medication to show a significant clinical benefit for patients with melanoma of the eye (metastatic uveal melanoma), researchers from the Memorial Sloan-Kettering Cancer Center explained at the 49th annual meeting of the American Society of Clinical Oncology (ASCO), in Chicago, Illinois.

The scientists say that their findings will probably change clinical practice for patients with metastatic uveal melanoma, which to date has been an "untreatable disease". Uveal melanoma is a rare disease, there are 2,500 diagnoses annually in the USA, half of whom develop metastatic disease. For decades, survival of patients with metastasis has remained obstinately at 9 to 12 months.

I'm me, not a statistic. Praying to not be one for years yet.

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bikerwifee's picture
Replies 9
Last reply 6/27/2013 - 10:07am

Lynn has been gone 2 weeks tomo and I still find myself coming on here daily and reading all the post. Im thinking of all of you and praying that God gives you the strength and courage to cintinue your fight.

Im holding on to my memories but I miss him. Our son is doing good but our daughter is very depressed and struggling. Im trying to be the string one. Lynn had so many friends that watch out for us. We are blessed.

Has anyone heard from gabsound?

Love and Prayers
BELVA

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Lynn has been gone 2 weeks tomo and I still find myself coming on here daily and reading all the post. Im thinking of all of you and praying that God gives you the strength and courage to cintinue your fight.

Im holding on to my memories but I miss him. Our son is doing good but our daughter is very depressed and struggling. Im trying to be the string one. Lynn had so many friends that watch out for us. We are blessed.

Has anyone heard from gabsound?

Love and Prayers
BELVA

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Owl's picture
Replies 4
Last reply 6/28/2013 - 6:42am

Hello everybody,

just wanted to share some good news with you. My husband has its 6 months on Zelboraf tomorrow and scans from last week show that it is still working. Tumors are smaller or gone. We are so thankful, it is very precious and we hope that it will continue. He feels very good most of the time, side effects come and go, but are manageable.

All the best,

Jenny

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Sasha's picture
Replies 1
Last reply 6/18/2013 - 10:18am
Replies by: hbecker

Hi All,

 

I haven't been to this Board in years!  I'm 39 years old and have a history of two melanoma insitus and one melanoma Stage 1a.  I have been cancer free for about ten years now.  I had a new place on my back just below my neck and wasn't sure what it was.  It was a colorless bump about the size of a pencil eraser on my skin that just recently started bleeding a little and became very tender!  I saw my doctor last Wednesday and she told me at the time she thought it was another melanoma.  She examined me and I had a couple of swollen lymph nodes in my neck.  She asked if I had been sick recently and I told her but I have been running a fever of around 101.5.

Anyway....the biopsy came back as "Invasive, well-differentiated, squamous cell carcinoma; with features of Keratoacanthoma."  I'm thinking that is good, right?  I'm suppost to go back on Thursday to have a WLE.  She said that further test weren't needed becuase this cancer is not likely to spreadsheet.  Does anyone have expenience with this type of cancer?  Am I doing my due dilligence by just having a wide lesion excision?     I'm

I appreciate any input you may have.  Thanks!

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out4air's picture
Replies 7
Last reply 6/19/2013 - 7:49am

My husband is Stage IIIb Metastatic (several unresectable melanomas on head) and has been taking Zelboraf 6 per day along with 10 mg of Prednisone for 25 days and has all the below symptoms:

All symptoms:
Excessive Sinus drainage and very watery eyes
Tongue and inside of mouth is coated white
Water and liquids taste terrible - very bad taste in mouth
Blurry vision, hard to focus more so when reading things close up
Redness in face and feeling of Tightness of face -just noticed skin was slightly flaking
Rash everywhere (shoulders to ankles) - doesn't hurt but if chilled it is a very weird feeling. The two spots on outside of calves do hurt but are red and you feel a lump
No stamina - tired frequently
Not sleeping well
Flat like warts on head and side of shoulder - Dr. removed them on Friday 6/14
Headaches
Everyday seem to feel worse

Also from From 3/26 modified neck dissection his neck muscle is still quite painful and very tight even after two months of physical therapy - would muscle relaxer help? Or has anyone tried acupuncture therapy for pain relief in neck muscle after this surgery?

Some studies have shown that combining a BRAF inhibitor like Zelboraf with a MEK inhibitor reduces a number of side effects, including rash. A MEK inhibitor was approved by the FDA a few days ago, under the trade name Mekinist. Has anyone tried the combination of these drugs?

We are in it to win it!

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