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

Hi All,

 My husband just had his 6 week scan after starting on PLX4032, the Roche Braf inhibitor. He had to be taken off for a 4 days during the last 2 weeks due to side effects, but had been back on the drugs at a reduced dose for the last week before the scans.

Apparently they show a slight progression, the doctor said he's calling it "stable" for now, and wants to check again in 3 weeks.

Jay had been on a MEK inhibitor previously and the docs were worried there might be some drug resistance to the Braf inhibitor becasue of that.

Did anyone else have a similar "stable" scan after taking the drug for 6 weeks and if so, what happened next?

We were so hoping we'd get at least 6 months out of this drug before moving on to the next.

 

thanks,

Emily

Login or register to post replies.

WTL's picture
Replies 23
Last reply 3/16/2012 - 6:52pm

Hi everybody - "A small hypermetabolic left supraclavicular focus without a definite CT correlate is of unknown etiology." This was the only abnormality on PET/CT scan for newly diagnosed melanoma on right calf. No suspicious enlarged nodes identified in the neck. Biopsy: superficial spreading, Breslow's 0.55, Clark's level 3, mitochic index 2/sq.mm, staged at IIA.

My dermatologist told me nothing - he passed me off to his PA, who seemed somewhat knowledgeable, removed a basal cell carcinoma but left the melanoma (a lot of it was removed in biopsy - don't know the method used). She said that it wasn't nodular but had a small nodule raised above the skin, and because of the Clark's level I would need to be staged (again?) - from web searching I got the impression I could also be at stage IB, and that Clark's level is not that great a tool.

Do I need a biopsy of that node in my neck? I read that leg melanomas usually spread to the nodes in the groin. So what are the chances that the neck node is melanoma?

What concerns me is that the PET/CT did not pick up my prostate cancer, which I know is small and has always been contained in the gland (the PSA is only 1.17 because there's not much of the gland left after two HIFU treatments, soon to be a third). So I have to wonder how accurate the scan is if it didn't see the PC (but it did see my plantar fasciitis!). Could the PC be the cause of that hypermetabolic node? What are the chances the node means no metastasis?

I seem to be on my own (had to find and set up the PET/CT scan), trying to find an oncologist, get in to County-USC (up to 2+ months wait), or City of Hope or UCLA. The PA said they don't deal with melanomas that can't be easily removed in the office, nor did they give me a referral to an oncologist ("we don't know any").

And I have no insurance, 6 months shy of Medicare. I'm up at 4 am worrying - the prostate cancer was scary enough (and has taken a lot of our savings), melanoma is scarier. Sorry to go on so long - trying to give as much info as possible, and have no one to ask, so all I do is search the web and make phone calls trying to get consultation and treatment.

Login or register to post replies.

arnie and sherry's picture
Replies 4
Last reply 5/28/2011 - 6:05pm

My husband arnie, was diagnosed in2008 it started with a mole on his back, 9 months latter it moved to his neck 21 lymph nodes removed started intrerferon for1 year very hard on him .13months later it spread to his chest  he had surgery to remove it . it has been about 11 months and he has been doing fine he just had a cat scan of chest abdoium pelvic and neck . does anyone know what we should try next.

keep on trucking

Login or register to post replies.

shellebrownies's picture
Replies 13
Last reply 5/18/2011 - 8:33pm

And the hits just keep on comin'....

After letting the doctor know that  Don has started having lower back pain, they did a new MRI of the area. Not only has the cancer spread in the bones of his spine, it has now affected the sheath surrounding the spinal cord in at least one place. This news is added to my getting the copy of Don's CT scan from the 6th that said he has "innumerable" small lesions in his liver. (These results were never told to us, thank you very much, I had to retrieve from the Patient Gateway website...)

Explain to me again why the the heck he hasn't received treatment yet?

Well *now* they want to treat him...with steroids and radiation to shrink growth in this area (which will then make him inelegible for his trials). We have decided to hold off a couple days while we get our second opinion from Dr. Lawrence on Thursday.

Anyway, thanks for letting me vent. I could use some encouraging words tonight...this dang disease is spreading so fast!

 

Michelle, wife of Don, Stage IV

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

Login or register to post replies.

eaca's picture
Replies 11
Last reply 5/18/2011 - 4:36pm

My dermatologist removed a mole from the center of my back last week because it had grown and started to bleed.  She called me two days later with the news that the pathology report has shown melanoma.  She has referred me to the Melanoma Center here in Houston and I have my first consultation scheduled for Friday (5/20/11).  What questions should I be sure to ask the doctor at this appointment?  Thanks for any advice and help from those more experienced!

Login or register to post replies.

Lauri England's picture
Replies 6
Last reply 5/25/2011 - 2:13pm

Every since I was diagnosed with Stage IIIC melanoma on my right shoulder June 2, 2010 I do monthly checks on myself.  3 weeks ago I felt a small lump in my arm pit under my left arm. It was actually so small at the time that my husband could not even feel it.  I am 7 1/2 months into Interferon treatments.  I waited to see if the lump changed at all or went away because I know Lymph Nodes swell sometimes do to infection or sickness.  Last Friday I noticed it had gotten a little bigger, about the size of a marble and can easily be felt now.  It is not painful and it feels kind of soft.  I saw my Onc Doctor yesterday and he appeared to be pretty concerned and wants a biopsy as soon as possible.  I now have an appointment for consultation next Monday with surgeon.  I am glad it was so soon.  They are not sure if they will do the biopsy that day or schedule surgery.  I am trying very hard to stay positive as this could be nothing.  Has anyone else had a similar experience?

Don't sweat the small stuff. There are bigger fish to fry!

Login or register to post replies.

PaulB's picture
Replies 9
Last reply 3/29/2013 - 9:29am

Hi Everyone!

I'm not sure if anybody remember me......

Its been long time that I haven't visit this site........Since I was Diagnosed on October 2002 Stage 3b Level 3 .

I have been doing very well for close to 9 yrs now and still cancer free!

I can't beleive that I have survived for almost 9 yrs and looking forward to 10 years anniversary next year as melanoma survivor.

Now, Everybody ...keep your faith in positive way, and not looking back in the past.

My family kept me going forward in positive life, that how I survived all those years!

GOD bless you all!

Login or register to post replies.

TracyLee's picture
Replies 14
Last reply 5/21/2011 - 11:06am

I just found out today I'm now stage IV, with small lesions in my lungs.

it has not been a year since I was diagnosed, and I've had 5 surgeries.

I'm now referred to Johns Hopkins for ipi. I can NEVER go to the doctor and stay ahead of the curve. I always get worse news than I expected.

My four kids and husband are all taking it badly, and so am I. 

Friends from church came over when they heard, and I am so grateful. It's prayer or get drunk, and prayer is a better example to the kids! :)

Login or register to post replies.

Lisa13's picture
Replies 7
Last reply 5/17/2011 - 8:07pm

I'm close to 3 months out from my WLE and lymph node dissection (groin). I've had a very small amount of lymphedema in  my leg but nothing major.  As a woman, I've also had some swelling in my vaginal area (sorry boys) :).  I've noticed a long, hard bump in between my scar (groin) and pelvic region.  I know it can be a number of things, but I wanted to know if anyone could suggest what it could be based on their own experiences.  There is no pain, it just feels hard amd long, not like a cyst and it's not on my scar. I'm not sure if I should make an appointment for my surginal oncologist to check it out.  I'm thinking because there is fluid there, it's created something abnormal.

 

Thanks,

Lisa

Login or register to post replies.

Lisa13's picture
Replies 2
Last reply 5/16/2011 - 6:35pm
Replies by: Lisa13, Carol Taylor

on

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

Login or register to post replies.

To the board:

Its been a few months since I posted, but wanted to ask a question to those that have had intestinal surgery. In February, I had a golf ball sized tumor removed from my small intestine via a partial bowel resection. Recovery was pretty quick (3 days in hospital) and all was fine until 4 weeks ago, when I was unable to get to sleep on a sunday night due to extreme abdominal pain. Wound up spending 3 days, 2 nights in hospital as it ultimately corrected itself without any treatment. CT revealed it was a partial obstruction.

Then, last week, same thing happened. Admitted to Sloan Kettering on Tuesday. CT revealed partial bowel obstruction plus, unfortunately, a small tumor on the liver. Obviously the news about the liver was most heartbreaking, but the pain from obstruction was most important to fix immediately.

My question, has anyone else had to deal with multiple small bowel obstructions? How did they resolve and did u need surgery again to fix? If so, have u had any problems since your corrective surgery?

I had an NG tube for 2 days last week, was uncomfortable, but it worked wonders. I was released on Saturday night, felt great yesterday and this morning, and then about 4 hours ago, have started to have similar pain/cramps. Really would not like to go back to hospital, especially as my doc basically said if I come back, I'm going in for surgery. Does anyone have advice on how these can be avoided? Diet perhaps?

Also, as far as liver goes, mine appears to be resectable, its small at 0.6cm near the base of the liver. The radiologist missed it the first time in fact. The docs at sloan recommended IPI (Yervoy) as I haven't done anything since I was stage 3 and did interferon. Any thoughts on getting it resected? Docs advised against it for now. They did mention possibly post treatment, I get it ablated. 

Any and all advice welcome.

Kind regards

Wetterhorn, Stage IV, Liver Met

Login or register to post replies.

Nebr78's picture
Replies 2
Last reply 5/17/2011 - 2:08pm

I have one thing then another with this M-stage iv.  Lumps, tingling, weakness all over.   Now this:   There was always supposed to be a small mass on my lower spine but caused no problem.    For about 2 weeks now, sever pain in lower left on my back.    Pain pills having hard time challenging it.

Took a ct scan and waiting for Dr. to give results.   He said possibly if mass grew  it could cause the  pain..  Some of the other stuff has left.   He said if mass has grown he will recommend radiation.  Just got done with a bunch of that on face, chest.

If anyone has had a similiar thing I would appreciated you telling me.   Remember I am 79yrs. old and have heart disease for 40+ years.

I think I am going to have a raffle so my wife  can have some money.    Sell ticket to see which one: (heart or Cancer)  gets me first.  !!!!!!!!!!!

I seem  to learn more about me on this forum than when I go  to Dr.   Which is 3-4 now.     Thanks

Login or register to post replies.

itsmitzi's picture
Replies 9
Last reply 5/18/2011 - 11:07pm

I know oncologits don't like to order pet scans for stage 2 folks like me unless they are symptomatic,but my gp doctor wants to do a 2 year follow up pet scan.  The only symptom I have is a palpable lymph node under the culprit arm.

I sorta figure 'why not?' as it's a chance maybe to see if I'm all okay.

mitzi

Login or register to post replies.

Shelby - MRF's picture
Replies 4
Last reply 5/17/2011 - 3:40pm
Replies by: Ali, washoegal, Charlie S, King

We are happy to report that in the next couple of hours, the bulletin board changes that you recommended to us will go into effect.  They should be fully implemented by approximately 4pm EDT today.  This change will make the bulletin board topic posts sorted by the topic post date, rather than by the last comment date.  This will be the default.  You can also choose ascending or descending.  You will have the ability to sort it "the old way" (by comment post date), should you want to.  It will remember your preferences only if you have a registered profile. 

Thank you very much for your patience and please don't hesitate to contact me if you have any questions.  Have a wonderful day!

Shelby - MRF  

Login or register to post replies.

carol b's picture
Replies 7
Last reply 5/17/2011 - 10:16am

Well,, 4 of my tumors have disappeared, no sign of them at all. YEAH!!!!  The Huge one under my arm has grown 3 more cm. It was no surprise as you can literally sit and watch it grow.. I have a small 3mm mass on my tenth rib and a small 5mm mass on my right lower lobe of my lung. Neither has been tested to be cancer.. I refuse to believe it is as there could be so many more benign things that they could be. I have a spot on my hip bone with FDG uptake. I'm gonna say that where they took out a piece of bone for a spinal fusion in 2000.. I'm refusing to believe my cancer has spread. I will get my IL2 on Wed. and it will knock out any little thing i have, I believe this From my very soul. God is holding me and he wont let go. My prayers are all with you on your journey, what a horrible disease this is. It affects every one that loves us. Its as if they have it to. They have the same feelings we do but do not ponder on it like those of us with the disease. Myself i have rather have the disease than to have to watch someone i love die slowly.. Anyways. i will say prayers for caregivers as much as for you that has the disease. I want to thank all on this board for helping me get thru this. Its amazing how a few little words from someone you have never met can make you strong..

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

Login or register to post replies.

Pages