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.

Expand/ Collapse Topic
 
Replies By
View Topic

Background: Don was denied coverage for Zelboraf by our BC/BS Federal Employee Insurance Plan on February 11, 2013.

Thrilling news this week is that our appeal to the Office of Personnel Management in Washington DC was APPROVED! This is a little anti-climactic, since Genentech agreed to provide Zelboraf to Don 2 weeks ago. However, it is our sincere hope that this victory will pave the way for other non-V600E BRAF-positive patients.

Don continues to do extremely well at the rehabilitation center. After 3 weeks, his strength and stamina have improved phenomenally. He's been on the Zelboraf for two full weeks. When he started the Z, he was extremely weak and almost completely bedridden, so his oncologist started him on 3 pills every 12 hours. In those two weeks, he has progressed to walking with the assistance of a walker, has been practicing on stairs, and his wit, intelligence, and sense of humor have bounced back 100%.

Looking at these two paragraphs, they seem so "short." But you all know the emotion and stress and huge amount of effort on the part of both patient and caregiver that underlies every single word.

I just realized that I had never updated Don's Treatment profile since I joined this community, so it has now been updated with the events that have happened over the past 2 1/2 months since getting the diagnosis. What a ride it's been...

We return to Dana Farber on Tuesday, April 2. They are not going to believe how well he's doing. I'm wondering if Dr. Ibrahim will increase his Zelboraf dose.

I am hoping to have a conversation with Dr. Ibrahim about Plans B and C... Don did have one infusion of Ipi before all hell broke loose and he became partially paralyzed, had brain sugery, and conquered rehab. Don't know if she will entertain continuing with Ipi while he's on Zelboraf (I believe we might be able to get 3 more doses in within the 16-week window). Is this something we should be asking about?

I have also been in touch with Dr. Keith Flaherty at Mass General who is willing to see Don for another opinion/options. Here's what his nurse conveyed to me just yesterday:

"Dr. Flaherty suggests that your husband can plan to be evaluated here either at the first suggestion of tumor growth on his scans from this point forward or, alternatively, to come to see him while still on therapy and responding.  This allows for a general discussion of options.  The only disadvantage of the earlier visit is that the clinical trials are evolving so rapidly that he theoretically would  go on might be closed when he he would need them but others might be available."

Any reactions to this?

Positive thoughts, enormous thanks, and love to you all.

Janet Lee

Login or register to post replies.

KevinM's picture
Replies 9
Last reply 4/1/2013 - 5:53am

So, I just realized that today is my 7th year anniversary of being NED!! I lurk on this site a bit now....but it was a huge part of helping me through the surgeries and Bio-chemo in the summer of 06. 

I was first diagnosed after finding a lump under my arm. I have an unknown primary. Like most I was pretty scareed when first diagnosed and couldn't think about anything else but melanoma. My youngest son was in high school and oldest a freshman in college. I remember my wife crying one night saying "I only want 5 more years with you". I looked at her and told her to expect to get old with me....she wasn't going to get rid of me that easily!

Since then, I've watched 2 amazing young men grow up, graduate college, get great jobs and find amazing young women. Run 9 marathons, got my motorcycle license and bought the Harley of my dreams. Volunteer with the Melanoma Foundation of New England as often as I can.  Looking forward to celebrating  my 32nd anniversary later this spring! She wanted just 5 more years???? Haha....not gonna get rid of me any time soon!!

To all engaged in the fight right now.......keep fighting and live life to the fullest everyday!!!

Peace and love to you all!!

Kevin

Login or register to post replies.

Has anyone in this trial experienced significant bloodshot eye(s) in this trial? I am in cycle 12 and had an issue last month paused trial meds for 10 days while using a prescribed eye drop. Eye cleared in about 8 days. back on meds for 10 days and bloodshot is back.

I have had amazing results in the trial with very few side effects - minor rash/itching and some wart like growths on my legs (they weren't much to look at anyway).

Wilfred 

If you fight, you may lose, If you don’t fight, you will lose.

Login or register to post replies.

sjl's picture
Replies 17
Last reply 3/12/2017 - 9:11pm

My husband had his third round of yervoy 2 weeks ago.  He's also on pain meds for tumor growth that is causing jaw pain.  Although he's had some fatigue intermittently since starting treatment and during his prior treatment of carbo/taxol, he's had a whole new level of fatigue for the past week or so.  Some days he can't make it to his office job at all and on others he can work only a few hours before he needs to come home.  The fatigue can come on fast.  It's overwhelming.  Bloodwork done yesterday showed everything to be normal, we were told.  They tested his thyroid and adrenals from what I can tell along with the usual RBC, WBC, etc.  Now they want to see him on Tuesday for more bloodwork.  I don't know specifically what they will be checking as my husband took the call and doesn't ask any questions.  Have any of you had this experience of overhwelming fatigue while on yervoy and if so, how did you deal with it? Is this normal???  Are there things I should be asking the doctor on Tuesday?

He's been in so much pain with the tumor growth and the pain meds just aren't helping.  He sleeps sitting up.  The tumors on his neck are now huge and we've been told that we just have to be patient a while longer.  I do understand that yervoy can take time to work.  I just with he would feel better while we wait.  If this fails, it's back to carbo/taxol to try to shrink them again and give yervoy more time to work. 

We've talked to a radiation oncologist who agrees with the melanoma specialist on the course of treatment.  He reccomended that we talk to a radiation oncologist at UPMC Hillman where he goes for treatment. just to see what he says but for now thinks we should stay the course.  Our options seem so limited.

Login or register to post replies.

5374brian's picture
Replies 3
Last reply 5/5/2013 - 11:10pm
Replies by: 5374brian, lrkg1234, cltml

My wife finished her 4 treatment of Ipi on 3/19. A week before her final treatment the tumor on her throat began to bother her. By looking in her throat it looked as the tumor had grown into her throat area causing some obstruction. We called Moffitt and the oncologist said to come on in for it to be checked. They did a scan of her neck. The scan showed that the tumor had not grown any since Jan. 2013. They assured us that she has plenty of room for drinking and eating but due to it being a high traffic area it must feel strange. The reason given for the feeling of the size change was the tissue and lymph nodes are swollen in that area. We are scheduled April 4th to see a throat specialist at Moffit to see if he has an opinion. The next thing that has started happening now is the lesion in the throat seems to be building up mucus and causes her to gag and spit on a regular basis. Whatever the stuff is coming from the lesion in the throat in the mornings it causes her to have a sour stomach. She said it is the worst tasting stuff she can imagine. Is all of this the treatment attacking the tumor? What is the stuff dripping from the tumor? Thanks for your opinions and help. 

Login or register to post replies.

Gene_S's picture
Replies 2
Last reply 3/29/2013 - 8:17pm
Replies by: hbecker, Colleen66

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

Login or register to post replies.

randallgford's picture
Replies 7
Last reply 3/30/2013 - 5:11pm

Randall had a brain mri a week ago, showd 5 small brain mets. Radiation Oncologist recommends

cyberknife. Yesterday had mri/ct for mapping/sequencing for cyberknife and this mri shows

14 mets, and they are now recommending wbr. Randall completed two yervoy treatments and has

two left. each week when we go to onco appt my husband seems to appear well, his blood work

is good and dr is optimistic. When we are home, he looks pale, thin, and his belly is protruding more

and more. Dr. gave us water pills three days ago saying the liver sweats and creates fluid in the abdomen.

So why would I not think he liver mets are multiplying like the brain? Onc said to give the water pills one more

day and he will see him tomorrow . He has alot of tumors lung, abdomen, and started with only 2 on liver

but im scared they've increased. What if he strts wbr and it knocks him out because the rest of his tumors

are growing? I know Im babbling but Im scared. What other questions should I ask the onc tomorrow?

Zbraf is an option because he is braf positive, but doc wanted to wait til yervoy then assess because

he felt Randall wasnt deteriorating. I think he is. BUT I DONT KNOW MAYBE IM PARANOID.

 

Never give up!

Login or register to post replies.

Lyssa's picture
Replies 5
Last reply 3/28/2013 - 3:31pm

Hi, my mom (age 71)  was recently diagnosed with stage 4 mucosal melanoma.  It started in her nose, she had polyps removed and they turned out to be melanoma.  She was sent to Rush University in Chicago and was to have surgery and radiation to her face.  However, a PET scan turned up melanoma in the bones of her spine and liver.

She is currently getting IL-2.  They had her do high dose radiation to the spinal bones last Friday and then started IL-2 on Monday.  Dr. Kaufman reported that recent research is finding doing that radiation before the IL-2 may dramatically increase response rates to the IL-2.  I just found out she is going to be released from the hospital tomorrow.  She got six doses of IL-2.  I guess she had a rapid heart rate, mouth sores, and was just generally very out of it so they are stopping.  They said six is an average number of doses.  I am having trouble finding information on the number of doses, does that seem about right?

She will have two weeks off now, then go back in for another week of IL-2.  I guess after that they will wait six weeks and give her a scan, then go from there.  Here is praying that it will work!

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 3/30/2013 - 12:02pm
Replies by: lou2, SoCalDave

Can melanoma look like a tiny black pinprick on the skin?

I realize this can only be known for sure with a biopsy, but wondering if anyone has ever seen this manifestation in a patient not under any kind of systemic treatment.

Login or register to post replies.

G-Samsa's picture
Replies 6
Last reply 3/29/2013 - 12:38am
Replies by: jeffjohn78, jim Breitfeller, Anonymous, G-Samsa

I noticed that in an earlier post a member (is that what we are?) indicated that he was having a very positive response in a trial that paired Ipi with a new compound (INCB 024360). How much promise does this approach offer-- anyone know? It seems to be different than anti-PD-1 and Ipi in it's attack objective..... I noticed that restrictions in the current trial require that you've had no prior treatments with immunotherapy compounds. Just wondering if there is a belief that this may eventually open up another avenue for us to follow. I myself am in an anti- PD-1 trial --but it would be nice to know that the arsenal I may eventually need to rely on is growing.

Login or register to post replies.

meeshka6059's picture
Replies 7
Last reply 3/31/2013 - 3:23pm

It is with great sadness that I tell you that I lost my father to this dreaded disease yesterday morning at 7:30am. He went peacefully and pain free, surrounded by love. Thank you for all your support and kindness, and thank you for being here with me on this journey. With love and light. ~Michelle

Login or register to post replies.

buffcody's picture
Replies 8
Last reply 3/30/2013 - 9:50pm

I was at my oncologist's today, and he feels the course of ipi was probably successful given the fact that the one tumor I have has not grown much if at all and, despite having had two brain tumors, there have been no new tumors anywhere over the last two months.  After one more set of scans two months from now, if all stays more or less the same (I will have the one tumor removed surgically), he would recommend a reinduction of ipi.  He did warn, however, that, as I am on Medicare, that Medicare seems to not pay for a reinduction of ipi.  Have any of you faced a similar situation?  Was that your take also?  Can you think of a path around paying $200,000 or more out of pocket.  The University of Michigan Hospitals, not surprisingly, are not going to pick it up.

Login or register to post replies.

Wolverine's picture
Replies 4
Last reply 3/28/2013 - 11:06pm

I am stage IIIC melanoma with unknown primary.  I have been taken Interferon since November 2012.  Overall I have done fine with the exception of being wiped out (tired) and a little weight loss.  I haven't had the energy to exercise.  I am seriously considering taking off for the spring/summer.  As I understand, Interferon has not been proven to extend overall survival rates.  I have come to the opinion that I have a better chance of survival if I am not worn down and unable to stay active.

Wishing everyone well.

Everyday is a Gift so Fight Strong, Live Long

Login or register to post replies.

DonW's picture
Replies 24
Last reply 4/11/2013 - 7:41pm

Unfortunately, the news isn't good. Dian's husband, Bob, called me this morning with the news that after going home from her IL2 treatment, Dian had a brain hemmorage and is now back in Sacred Heart hospital in Spokane. Apparently the bleeding is stabilized now, but Dian is in and out of consciousness and she has motor problems on one side. Bob thinks she might have had an undetected brain met that caused the problem. Not much else to say other than I'm hoping she come through this.  

Login or register to post replies.

jeffjohn78's picture
Replies 7
Last reply 3/28/2013 - 11:29am

Hello,

 

Got great news today!  Had previously a 1 cm tumor in y arm, 4.3 cm nodule in my lower left abdomen and 1.9 cm nodual in my upper left abdomen.  As well as 7 mm and 2mm spots in my brain.

 

Found out today, both brain spots are gone, the arm tumor is gone, and both abdomen tumors are shrinking!  best news I could have heard....

 

I am currently in a clinical trial at the Angeles Clinic in Los Angeles...Ipi and experimental pill.  pill doesn't have a name just an bunch of letters and numbers lol.  Its a new trial as I believe I was only the 2nd patient enrolled.  I believe the ful name of my trial is on my profile.

 

Feeling very grateful today to say the least!

 

Jeff

Login or register to post replies.

Pages