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.

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good pet scan and brain mri yesterday.

only one small spot at suv 3 left. stable from 3 months ago.

zel goes on at half dose, prednisone stopped.

4 years down the road since stage iv diagnosis. Never thought i'd make it that long when it started....

Also never thought my straight scandinavian hair would turn into a beige-greyish version of the haircut of Michael Jackson young.

 

Beatrice stage IV

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Hi all, so sorry to be back. My husbands first diagnosis in 2001 brought me to the board and I

was on often, but over the years I really felt it was OK. He had a chest xray with us thinking

he had bronchitis/pneumonia (coughing, hoarse) and they found a 3.8 x 3.4 lung mass and

several nodules. Also scattered masses over abdomen. They did a biopsy of the lung mass and

found it positive for melanoma. We have an oncologist appt Wednesday. I am terrified. He is 58

we have one daughter age 20, we went to her college yesterday and told her, but downplayed it

so as to not worry her. I am so scared because he seems so sick and because of the stomach.

I have a call in to Sylvester Center in Miami as well where he went the first time - he did a year of

interferon then. But the oncologist has a good reputation as well so I guess we will start there. I

imagine they will do a brain ct to check for brain mets? Primary says they will probably remove

lung mass via surgery. I have a list of questions - what about liver, is he braf positive, ive read

about yervoy and ipi which sound promising. I just want to stop crying. I know I need to be strong.

Thanks for any advice. He is 58 fit and healthy otherwise..

Vicki his loving wife

Never give up!

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dodgedh2's picture
Replies 9
Last reply 2/18/2013 - 6:08pm

It's been 4-1/2 years now since my surgery and stil NED! Onc says that if my next scan (6 months) comes in clean, he will be releasing me to my PC to monitor. No need to come back unless new symtoms develop. I'm still letting it sink in. Can't believe I made it this long and I'll be glad to not have those occurannces of scanxiety every 6 months. I can't shake the thought though that this monster can come back at any time, any place, and without symptoms. I'm sure my next scan is going to be a real trial for my nerves, but I'm praying that I make it with another clean bill of health.

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Hi all, so sorry to be back. My husbands first diagnosis in 2001 brought me to the board and I

was on often, but over the years I really felt it was OK. He had a chest xray with us thinking

he had bronchitis/pneumonia (coughing, hoarse) and they found a 3.8 x 3.4 lung mass and

several nodules. Also scattered masses over abdomen. They did a biopsy of the lung mass and

found it positive for melanoma. We have an oncologist appt Wednesday. I am terrified. He is 58

we have one daughter age 20, we went to her college yesterday and told her, but downplayed it

so as to not worry her. I am so scared because he seems so sick and because of the stomach.

I have a call in to Sylvester Center in Miami as well where he went the first time - he did a year of

interferon then. But the oncologist has a good reputation as well so I guess we will start there. I

imagine they will do a brain ct to check for brain mets? Primary says they will probably remove

lung mass via surgery. I have a list of questions - what about liver, is he braf positive, ive read

about yervoy and ipi which sound promising. I just want to stop crying. I know I need to be strong.

Thanks for any advice. He is 58 fit and healthy otherwise..

Vicki his loving wife

Never give up!

Login or register to post replies.

Hi all, so sorry to be back. My husbands first diagnosis in 2001 brought me to the board and I

was on often, but over the years I really felt it was OK. He had a chest xray with us thinking

he had bronchitis/pneumonia (coughing, hoarse) and they found a 3.8 x 3.4 lung mass and

several nodules. Also scattered masses over abdomen. They did a biopsy of the lung mass and

found it positive for melanoma. We have an oncologist appt Wednesday. I am terrified. He is 58

we have one daughter age 20, we went to her college yesterday and told her, but downplayed it

so as to not worry her. I am so scared because he seems so sick and because of the stomach.

I have a call in to Sylvester Center in Miami as well where he went the first time - he did a year of

interferon then. But the oncologist has a good reputation as well so I guess we will start there. I

imagine they will do a brain ct to check for brain mets? Primary says they will probably remove

lung mass via surgery. I have a list of questions - what about liver, is he braf positive, ive read

about yervoy and ipi which sound promising. I just want to stop crying. I know I need to be strong.

Thanks for any advice. He is 58 fit and healthy otherwise..

Vicki his loving wife

Never give up!

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sheri47's picture
Replies 4
Last reply 2/18/2013 - 10:22am
Replies by: Sandy11, Anonymous, Phil S, POW

Lost my mom char on jan 31 her battle began in 1982, recurrences in 2001,2005,2009 , 2011, and 2012 to the brain , she was a fighter til the bitter end , so proud to have called her my mom , loved her so much .

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Erinmay22's picture
Replies 12
Last reply 2/18/2013 - 10:12am

 

I'm getting ready to start PD1 on Monday.  Had biopsy and new scans taken yesterday (still haven't heard how much my scans have changed in the last 4 weeks...).  
 
Curious to hear from folks that took Ipi and failed and then took pd1?  What type of results did you see?  I know I've read a number of different things...  
www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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Marcia1's picture
Replies 3
Last reply 2/17/2013 - 10:42pm
Replies by: Janner, NYKaren

Thanks to everyone who responded last week when my mother was in the hospital for dehydration and uncontrollable diarrhea.  They didn't use the Rimicade (sp.) but seemed to get it stopped with steroids.  Then she didn't go for 4 days and they gave her Go Lytley - sent her home this past Tuesday and now she's back in the hospital with a blood infection, renal failure and checking for cellulitis.  Her legs swelled up so much they were draining thru holes in her leg.  She doesn't feel really sick, but is weak.  I don't know if all of this came from the Yervoy treatment or not.  She's pretty much decided not to have another treatment, which the doctor did want to give her.  She'll be 87 this Thursday.

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bikerwife's picture
Replies 2
Last reply 2/17/2013 - 9:54pm
Replies by: Anonymous, jag

Does anyone know anything about either of these?

Temador and z?

abarxene breast cancer drug that seems to help with mel in body and brain?

What God leads u to he will. Lead you through

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cld's picture
Replies 8
Last reply 2/17/2013 - 12:00pm

3 months clear...not a long time i know,  but we all start somewhere, right?

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Owl's picture
Replies 1
Last reply 2/17/2013 - 7:10am
Replies by: aldakota22

This week my husband had his 8 week scan and it shows good results. 2 of 4 mets have even shrunk by 50%, the other 2 are also smaller, nothing new, brain is clear. After the devestating news that IPI killed any mets except these 4 we are thankful that Zelboraf works, though more cautious, just hope that we will have a long-term response. The side effects were really bad in the beginning, that's why he had a Z holiday and after that reduced the dosage to 3-0-3. Now the side effects are manageable, a little itchy skin, little rash, little joint paint and he is taking something to bring the uric acid to a normal level. Doctors stick to the dosage, so we are prepared for the next 8 weeks, plan a little holiday (late honeymoon) and enjoy life.

My thaughts are with all of you, especially with the caregivers who sometimes seem to suffer even more!

Jenny

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qtkitycat's picture
Replies 14
Last reply 2/17/2013 - 3:41am

Hi,

I want to thank everyone for creating a kind enviroment here.  I've posted before, but can't find my previous threads.

My fiance has been diagnosed with Stage IV Melanoma, mets in liver, kidney, spleen, adrenal glands and lungs ( they removed the tumorous testicle).        He has finally been approved onto Medi-cal with 100% coverage, so we would like to get a 2nd, 3rd, etc opinion and are wondering who we should go see.  We live in Bishop, Ca and will have to drive at least 3  hours to get to the closest dr, but we are willing to go further.

We just need a doctor that has a better outlook, rather than the one we are currently seeing...he says David will eventually become resistant to all treatments.  And I say BS to that!!  They've given him 10 months with now treatment and 14 months with treatment.  :(

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François's picture
Replies 4
Last reply 2/15/2013 - 10:11pm

I have been now 7 weeks o Zelboraf, and last tuesday I had a cat scan. My oncologist sent me an email last night telling me that he checked the pictures of scan and noticed that the 2 nodules in my lungs are SMALLER! (defitive report will take few days more to come out). Furthermore It's been  more than 4 months since my last surgery and surgery zone shows no envidence of any tumors in my groin. (I had 2 relaps within less than 6 months undernith the scar). I am on 8 pills a day can deal pretty good with side effects. I thank God every day for having this desease today and not few years ago. We all start seeing the light at the end of the tunnel!!!! 

François

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Anonymous's picture
Anonymous
Replies 3
Last reply 2/15/2013 - 9:59pm

Curious on folks experience with Zelboraf.  Did you get warts while on it?  Did you get them in odd places where the sun doesn't shine?  And is it possible to get them even after you stop taking Z?  I see my derm soon so I'll ask him about them also.  Oh the things we go thru!  

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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AllyNTAus's picture
Replies 6
Last reply 2/15/2013 - 7:41am

Hi everyone,

I've been going pretty well on the GSK BRAF inhibitor since I started on it 1 May 2012, all existing enlarged lymph nodes shrunk dramatically and stayed that way, lungs cleared up, no new things cropping up until now. My CT in Nov 12 showed a 7mm focal lesion in the fundus of the gallbladder. By my next CT on 9 Jan 13, it had increased to 15mm. I had an ultrasound today, and while I don't have the report, it is quite obvious to me from looking at the film that the lesion is now quite large, and looks a bit like a tree with several branches coming off it.

I have no symptoms at all, feel otherwise very well, and my melanoma oncologist has remained happy with my response to the BRAF inhibitor.

I have an appointment to see my local oncologist in the morning, but I am expecting bad news. I have read some articles that indicate metastisis to the gallbladder is fairly common, and if contained there, can respond reasonably well to surgical resection. I am happy to get rid of my gallbladder if necessary!

So I was just wondering whether anyone else had experience with a met to the gallbladder.

Hoping all of you are keeping well,

Allison

A bad day's fishing beats a good day's work everytime

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