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
Gracie's picture
Replies 3
Last reply 9/10/2011 - 8:38pm
Replies by: King, LynnLuc, lhaley

Yes I have been "lurking" for 14 months at stage 3b but recently progressed to stage 4. 

CT showed new nodule 1.5cm on left under arm chest wall.  Needle biopsy was positive.  Plus a lung nodule grew 6mm in 8 weeks that the pulmonary specialist tried to biopsy in late June but it was too deep and only 9mm at the time (too small) but is now 1.5cm. Still not absolute it is mel.

My melanoma specialist (oncologist) really thinks if I am "going to play ball, I should go for the home run" and try IL2.  I tried to join a trial study involving a surgery arm and the BCG (tuberculosis) treatment injection sponsored by JWCI.  I was rejected due to length of time we "kept an eye" on lung nodule that now has great suspicions to be mel even though we have not done a successful biopsy yet. 

I feel like I just want this mel out of my body right now but wonder if surgery is hasty as it may exclude me from other treatment options even though I am not sure what options there are at this point,

I have been on the ipi/placibo trial for 15 mos. and have not been unblinded yet.

Please share with me any options I could consider and if I should fly somewhere else to get a second opinion.

I feel like I know many of you by following your posts and now that I am in the scary boat, I love you all!

Gracie 

cancer is in my life, but is NOT my life

Login or register to post replies.

newmanmark's picture
Replies 8
Last reply 9/10/2011 - 3:49pm

Hello All,

I have had a small lump (pea sized) on the outside of my elbow for quite some time.  I can't remember if it was there before my cancer situtation started.  I was wondering if anyone knows if we have lymph nodes in the elbow region (outside of elbow)  about and inch and a half from the tip of the elbow?  Has anyone had a lymph node swell in this area due to the melanoma?  I know that its not the common regions for lymph node involvement.  I had a complete lymph node disection in both armpits and melanoma was found on both sides.  I am concerned that it could have traveled down my arm.

I don't want to panic but I guess I should go see my onclogist.

Thanks

Mark

 

Login or register to post replies.

himynameiskevin's picture
Replies 10
Last reply 9/10/2011 - 8:23am

Well, I just got back from the NIH for my monthly scans and it turns out all the tumors they're tracking in my lungs are still stable and/or possibly a tiny bit smaller. Except for one, unfortunately, In my left lung (I don't know if that's their left or my left) They think and hope that this one that appears to be growing is just being defiant of the therapy for reasons we don't quite understand and hope that the others will continue to shrink and stay stable for a long time to come.

So they want me back in 4 weeks, where I will get another CT and PETscan. If the scan shows it's still the only one growing, then the next day they're growing to do surgery on my lung and remove it manually. Hopefully with small incisions, a small instrument with a camera on it and minimal downtime if I lucky. If the scans show more than the one growing, then the ACT I think will have run it course, and there will be no surgery, but hopefully other possible options.

Strange times when you find yourself hoping for lung surgery. ;)

We'll see, you know, maybe there'll be some unexplainable miracle and the thing will just disappear. Maybe everything will, and they'll just send me home with a congratulatory handshake. They say anything is possible right?

Anyway, that's my update, overall I'm doing real good, still working and living as normal as I ever did. We'll see what happens in a few weeks. I'll let you all know.

Thanks for the ongoing concern and support.
-Kevin

Login or register to post replies.

Lisa13's picture
Replies 10
Last reply 9/9/2011 - 9:53pm

It's been awhile since we've done a rollcall for Yervoy/ipi, so I'd love to hear from the people who were complete/partial and non-responders.  There are many of us who have recently stopped or started treatment, so I'd like to see how everyone is doing. There's been a few postings in the past few days of people failing on this treatment and I'm getting worried and needing some ipi success stories pronto!

I'd also be interested to hear the non-responders next line of defense, especially from BRAF negative people.

Best of luck to each and everyone of us fighting this battle

Lisa - Stage 4

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

Login or register to post replies.

beatricefromPARIS's picture
Replies 2
Last reply 9/9/2011 - 5:37pm
Replies by: PlantLady, lhaley

Update to contribute to the IPI Yervoy message of hope for patients:

 After first course of ipi (March to May 2011), substantial partial response with disappearances of some tumors. A few active spots still showing on the pet scan. Overall status is now basically stable. Brain still clear.

Re-induction phase should start next week.

No major side effects in the first round. A bit of fatigue and "mumbling" tummy plus (temporarily) a bit high eosinophils but overall...an "enjoyable" treatment compared to the previous ones! I'm told this is predictive of how I should bear the re-induction. We'll see...

Beatrice (stage IV)

 

 

Login or register to post replies.

awg's picture
Replies 5
Last reply 9/9/2011 - 4:17pm

Hello,

 

I recently transitioned from high dose infusions to 3 weekly injections. I am tolerating things well but seem to be experiencing a dizzy feeling almost daily. I have read that dizziness can be a side effect of Interferon. Has anyone else experienced this, if so how did you treat it?

I currently do not have sinusitis so i can rule out all sinus issues at this time.

 

Thank you,

 

Allen

Login or register to post replies.

5jenjen5's picture
Replies 10
Last reply 9/9/2011 - 4:03pm

I had a .42 melanoma removed from my calf in May and just had more removed from my wrist and do not know the depth. My question is: I am a very small women and the melanoma on my wrist is very close to the bone is this a problem?

Login or register to post replies.

cincin1179's picture
Replies 24
Last reply 9/9/2011 - 3:47pm

Hi everyone - I was just diagnosed with Melanoma in August. It all happened pretty fast. I finally drug my butt to the dermatologist.. even though I had the mole and it didn't look right for a while. My initial appointment was August 17th, I got a call on August 23rd saying it was a 1mm melanoma.. and on August 31st (last wed), I had a big chunk of back removed and a lymph node taken out to be... tested. I seriously have been a mess. I have cried everyday and have been scaring myself looking at stuff on the net. I have my post-op appointment on Thursday and am hoping for the best but scared of the worst (especially since the surgeon freaked me out and said it was a little swollen). I will tell you one thing, it really opened my eyes to being smart in the sun. I guess I just need to talk to other people going through it at this point because as supportive as my hubby, family and friends have been... I still feel kinda alone with this one. So that's all.. nice to reach out to you all.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 6
Last reply 9/9/2011 - 12:23am

Hello All:

I am writing about my dad who was diagonosed with Melanoma a year ago.  His was very deep and it was taken out with clear margins.  It was recommended that he start on Interferon which he did with many complications and issues and stopped after 6 months.  He has been seeing Dr. Kirkwood in Pittsburgh as an add -on to his oncologist.  I have been in the medical field , one area being with Hospice so I have been extremely involved and with them through this difficult ordeal.  We were just in PIttsburgh where we were told my dad was cancer free for now and the same week received biopsy results from a local surgeon for something that just appeared on top of his head.  It is melanoma within 2 cm of the original site.  He just had the surgery and he now has a 5 inch incision on top of his head. He will return to Pittsburgh when the incision is healed, but wondering about being in a clinical study.  Interferon is not an option as he stopped it in May; Ipi has been mentioned and he is BRAF negative.  At this point in time the pet/ct is clear, but oncologists seem to believe that it is probably other places, but not shown up yet.  He had surgery 2 days ago and goes back to see the surgeon next wk.  Any ideas?  I have learned more about Melanoma than I have ever wanted to know and done so much research.  I am wondering about suggestions about any experts on scalp melanoma specifically and treatments .  They also classified my dad now as a stage 4 and I am confused by that.  At the present time with the tests we have at this time there is no cancer with the exception of the spreading from the original site on his head.  I thought stage 4 would be distant metastasis? At this time he has no lymph node or other organ involvement.  any thoughts would be so helpful! 

Login or register to post replies.

Jewel's picture
Replies 3
Last reply 9/9/2011 - 12:17am
Replies by: FormerCaregiver, Jewel

Hi,

9/2/11 my husband went back in for a re-excision of his original tumor ( 3 spots showed recurrance) all in same area. They did a full ELND due to the fact that lymph node was (is) swollen. If you go back and look at my last 2 posts you will see my husbands full history which started in Nov, 2010. We have not gotten the results back yet from ELND. I apologise for not having yet filled out his profile.

Now that the melanoma has traveled from his lower left calf to his left groin does that still make him a stage 3? Pet Scan and 2 MRI's one of head and left leg only showed cancer in calf and possible in groin.

It is amazing how well he is doing concidering the drains and the 3 X 8 inch graft they took off his thigh and put on his calf.

We are still waiting for the results.  If the groin proves positive in your opinion ( and I'm open to all) what would you do?

A very concerned wife who does ALL the research. My husband refuses to live in fear.

Thank you,

Jewel

Login or register to post replies.

deardad's picture
Replies 2
Last reply 9/8/2011 - 10:51pm

Hi my dad is 10 months down the track after his original diagnosis of stage 3. He had a craniotomy for a single met 5 weeks ago. Now he has 4 mets in liver and one in his spleen. He starts B RAF in a week. A CT scan is organised before he commences the drug but Im wondering why they haven't also arranged an MRI? There is one booked for 2 months after surgery but should we wait this long? My concern is that his original met in the brain doubled in 6 weeks and bleed, and I'm hoping he might be a candidate SRS rather than another craniotomy. What would you do?

Has anyone heard of positive stories with liver mets? My dads cannot be resected apparently. We are living every day like life will end in months and its so heartbreaking. I need some hope.

Nahmi in Melbourne

Login or register to post replies.

NYKaren's picture
Replies 22
Last reply 9/8/2011 - 10:19pm

Hi everyone.  

Got the biopsy results yesterday.  On the initial mel section next to my ear, the ipi has killed the cells on the surface, but they're still there beneath the skin.  The new area next to that section and very close to my eye is indeed melanoma.  Very disappointing to hear that it's still spreading.

I am at week 14 of ipi (had 4th and final infusion at week 10.)  So far, I'm a partial responder.  Dr. Wolchuk said that hes seen people still growing mel at week 12 with a big turn-around at week 16.  But he also says that I need to think ahead as if I will only see a partial response.  Nobody's happy.  I am absolutely not a candidate for another surgery...there's no room for margins either near my eye or my ear, which it's touching.

 Attn Jimmy: Interestingly, Dr. Halpern (in conjunction w/Wolchuk) prescribed Aldara (now available in generic).  I'm to put it on generously (use the whole packet) every night, and cover w/saran wrap for about 30 minutes.  They're hoping it will work w/the Ipi.  He also said that since it's so close to my eye, my eye-lids might blow up.  

Aldera Question:  I know the skin is supposed to react--do you stop the aldara if it blisters, etc??  I feel so vulnerable because Halpern is on vacation this week & Wolchuk is away as well. And I feel so stupid because Halpern told me that it's supposed to blister, but I didn't ask him what to do then, and now he's away! (Yes, I know that there are other docs at Sloan, and I will call them this week.)

Empire BC/BS paid for all my Ipi infusions BUT THEY WOULD ONLY PAY FOR 15 PACKETS  OF ALDERA for one month!  I'm hoping Halpern's office can fight it.

Meanwhile, we're seeing Dr. Wolchuk on Sept. 1.  If I haven't miraculously responed fully to the Ipi, we have to decide next step--a combo of 3 chemo drugs (I stupidly didn't write them down) or IL-2.  They don't give IL-2 at Sloan, but at Yale-New Haven.  Also, I'm Braf negative.

My husband heard him say that both chemo and IL-2 have a low response rate--does 20% sound right??  I'm sure I heard that if one responds to IL-2 it's a lasting response.  He said that the chemo doesn't have many side-effects, and I already know how brutal the IL-2 can be.  My 21-year old son says "go for the most aggressive treatment."

I guess it's wait and see with the ipi/aldara and more decisions on the 1st.

All advice, suggestions welcome!

thanks,

karen

 

Don't Stop Believing

Login or register to post replies.

jax2007gxp's picture
Replies 6
Last reply 9/8/2011 - 6:55pm
Replies by: jax2007gxp, Anonymous, lhaley, Lauri England, Donna M.

Hi all,

I received the results of my PET/CT and brain MRIs from yesterday....other than something minor going on in my thyroid (small potatoes compared to mel), there were no signs of any metastases.  I never thought I would be so relieved to have surgery confirmed!

The lymph node which signaled me to see the doctor swelled up pretty much overnight.  It was about 5 cm when an ultrasound was performed.  Because it was so large and had grown so quickly, I was concerned that may have been a bad sign.  I am so very thankful to have good results and hope others facing the early stages of this war will remember that sometimes it doesn't end up being the worst case scenario.

The next battle is to be fought on Friday when the doc removes the lymph nodes from my right groin.

Wishing all of us long futures of clear scans!!!

Jacki

Login or register to post replies.

RMcLegal's picture
Replies 13
Last reply 9/8/2011 - 6:47pm
Replies by: MikeWI, RMcLegal, Cynthia C

A member of this discussion board community inspired me to write some new lyrics and post a YouTube video link for the Bee Gees' "Stayin' Alive".  Put on your disco shoes and come dance with us at www.hotelmelanoma.blogspot.com.  Best wishes to all.

Login or register to post replies.

mommydog's picture
Replies 1
Last reply 9/8/2011 - 12:21am
Replies by: Charlie S

My husband has been on this trial at UCSF for 26 weeks now.  His tumors have been reduced by over 74% and have gone from a total of over 15 cm to slightly over 3 cm.  He has had 3 PET scans, and there has been improvement each time, although it has been less dramatic each time.

Although I am thrilled, I am concerned about all of the comments that this treatment causes only temporary results.  What is the plan b?  When do we know that it is time to pursue another course of action?  Is the BRAF/MEK treatment always just temporary?  Since 77% of the patients from the Roche trials are still living, how do we know this to be true?

Thanks for any insite or advice.

Deborah

Login or register to post replies.

Pages