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
lhaley's picture
Replies 14
Last reply 4/20/2011 - 6:41pm

I've been having stomach pains and had an ultra sound by a local Doctor.  It showed possible calcification of the gallbladder or stones that had adhered to the gallbladder. He set me up with a local surgeon. Meanwhile I sent a copy of the scans to my melanoma specialist to compare. It really irritated me that the local hospital said they had nothing to compare to and I had handed them my scans from 2 months ago.....   Anyway, the surgeon seemed wary to operate on  me because of my history and wanted to wait till my next PET.  Just got a call from my melanoma specialist that they agree that the ultrasound is not clear cut.  They are setting me up with a GI oncologist that is part of their team.   Here's to hoping that this is just a strange way to present gallstones!! 

Linda

Stage IV since 06

Login or register to post replies.

Nabokov's picture
Replies 3
Last reply 4/26/2011 - 9:01pm
Replies by: MichaelFL, nicoli, CKasper

Hi, everyone

I am a writer working on an article for oncology practices, to encourage them to have someone at the office who helps patients understand how much their insurance will pay and tell them about assistance programs available if they need them for their out-of-pocket portion.

Some oncology offices already have such a person. I'm interested in hearing about experiences from patients.
Did you have someone at the practice who was knowledgeable about insurance to talk to?
Was information given to you at the beginning about how much your costs would be, or did this come after you got the bill (and, perhaps, were shocked).

If you would like to respond here, that is fine, but also I would like to interview someone with experience (good or bad) and how the oncologists office did or could have helped you understand things.

Please contact me at marian.wiseman@earthlink.net

Login or register to post replies.

mommydog's picture
Replies 7
Last reply 4/27/2011 - 1:55pm
Replies by: Anonymous, mrsmarilyn, dawn dion, mommydog, deffk1105

My husband is starting his fifth week of GSK's  Braf/Mek trial.  The only side effects he has had prior to now are a fever and chills occurring 4 hours after his dose and lasting about two hours.  This did not occur every day, and when it did, it was with varying degrees of intensity.

For the last 24 hours, he has had continuing fever and chills.  Sometimes the fever breaks for a short while, but returns.  My husband is afraid to call the doctor about this for fear of being taken off the trial, which otherswise seems to be working.

Has anyone had these symptoms?  Any advice? 

Login or register to post replies.

Carmon in NM's picture
Replies 25
Last reply 5/3/2011 - 2:53pm

My husband and I got down to Albuquerque this morning expecting to do the whole round of pre-surgical exams, tests and interviews. Instead, we got my medical and surgical oncs coming in to do the doctor version of the Good News Happy Dance!!! The brain MRI and PET/CT scans done on the 13th say,.."No evidence of metastatic disease." !!! Everything is completely clear on both the brain MRI and the full body scans...even the little oddball things they were watching are gone.

I am a complete responder to the clinical trial I did combining carboplatin, paclitaxel and temodar. The adrenal tumor has completely disappeared and the oncs agreed that the risks of a complicated and difficult surgery to remove a tiny bit of inactive tissue were not worth the possible benefits. Instead they are suggesting a round of radiation at the adrenal site to improve my recurrance odds as well as a reduced dose of profilactic whole brain radiation. My medical onc is setting up a consulation for me with an oncology radiologist to discuss this and also with a neurologist when I expressed concern about adding another layer to the brain trauma I already deal with so that I can make a completely informed choice.

But for tonight, my husband and I are CELEBRATING! Thank you all so much for prayers and words of support - what an incredible group to share the entire curve of this disease with - Carmon in NM (worn out from dancing!)

Carmon in NM: Stage IIIB 9/2008; Stage IV 6/2010 with brain and adrenal mets; NED since 4/13/2011. It’s not what happens to you, but how you react to it that matters. ~ Epictetus

Login or register to post replies.

kbc123's picture
Replies 8
Last reply 4/18/2011 - 8:23pm

Okay the questions begin again....I have a lump on the tip of my elbow.  Not large, the size of a small pea, not too painful, just uncomfortable.  I went for xray today becase I did fall down the steps about four weeks ago.  I was praying that i have a bone chip or something.  The doctor says she thinks its a lymph node.  Ugh.  Now what?  I never heard of a lymph node on the tip of the elbow...

1)  She was just a medi-merge type doctor, maybe she knows nothing?

2) I called my doctor from the car and he will get back to me sometime soon.  I am still waiting for a phone call from April 7....(my melanoma guru --- not to comfortable with that office anymore but that is another story..I went to NY for this?) Time to venture to a new state for a new specialist...

3) The lump is on my right elbow.  My SNB was the left armpit.

4) Could we all just stop and pray that it is probably a calcium deposit or something? 

Just when I thought I was getting a little bit better with dealing, I am punched in the face with the fear of God.  Any info would be great, y'all!!

Login or register to post replies.

awg's picture
Replies 16
Last reply 4/22/2011 - 12:12pm

I am interested in hearing from other folks who have taken the 12 months of Interferon.

5 days a week (infusion) for first month

3 weekly injections from remaining 11 months

Did you have a port placed for the infusion portion of the interferon?

Seems excessive for 30 days of use. ( I hope!!)

I have no problem with needles and at this point have really good veins that make for easy sticks, I may be under estimating the effects of the interferon on my ability to stay well hydrated thus leading to issues with IV sticks.

 

Thank you,

AWG

Login or register to post replies.

sharmon's picture
Replies 2
Last reply 4/18/2011 - 8:23pm

Hi, everyone, 

Brent is my husband and we are sitting at MD anderson as I write.  He has been on the GSK MEK trial for 14 months and progressed last scan.  Now he doctors want to place him on the MEK chemo combination with Alimta which is approved for lung cancer.  Or we can wait for the MEK /PI3k trial to open sometime in the future here at MDA.  Today after making a few calls to GSK  I found that a Nashville location has the trial we want MEK / PI3K.  Not sure if he can get in.   I don't know what to do or think.  He has had chemo agents in the past and they really knock the Hell out of him physically. 

Does anyone have any input???

Thanks for taking the time to read this.

Sharmon

Login or register to post replies.

Hi, everyone, 

Brent is my husband and we are sitting at MD anderson as I write.  He has been on the GSK MEK trial for 14 months and progressed last scan.  Now he doctors want to place him on the MEK chemo combination with Alimta which is approved for lung cancer.  Or we can wait for the MEK /PI3k trial to open sometime in the future here at MDA.  Today after making a few calls to GSK  I found that a Nashville location has the trial we want MEK / PI3K.  Not sure if he can get in.   I don't know what to do or think.  He has had chemo agents in the past and they really knock the Hell out of him physically. 

Does anyone have any input???

Thanks for taking the time to read this.

Sharmon

Login or register to post replies.

claudia-uk's picture
Replies 5
Last reply 4/18/2011 - 5:47pm

My husband received his second infusion last Friday. He now has very itchy skin on the legs and arms, but it doesn;t show any rash. I often read that a rash is a good sign that Ipi works.But what about  itchy skin without a rash?

We are waiting not for sigsn that Ipi starts working but are not sure if that is a sign or unrelated.

Besides that he is very tired, but was tired before Ipi anyway.

Login or register to post replies.

ValinMtl's picture
Replies 0

Hi Donna,

I'm having trouble getting that leg garment in Canada that we discussed.  I did call one store in Burlington but they never called me back (her name was Meg).  Do you have the phone number of the store that you ordered it at.  Many thanks, Val

Live Laugh Love Nothing is worth more than this day!

Login or register to post replies.

Carmon in NM's picture
Replies 4
Last reply 4/18/2011 - 6:47pm

I'm finally having surgery at UNM in Albuquerque tomorrow to remove my right adrenal gland and what is left of the tumor tissue after completing the clinical drug trial. Hopefully, with a little Grace this will be the end of treatment for a while and after six months of chemo I can enjoy the summer! Even though this will be the most serious surgery I've ever had, I'm looking forward to finally getting it done. They will be opening me down my mid-line so I have a six week recovery of doing NOTHING! My husband figures they will have to duct tape me to my recliner to keep me quiet. ;)

I had a pre-surgery brain MRI and full body PET and CT scans last Wednesday and I'll get the results today when I meet with my onc and surgeon. Hopefully it will remain good news with nothing new and that darned adrenal tumor too tiny to even show now! I'll be thinking of you all while I'm in the hospital and hoping everyone is well. I'll post when I can!

Carmon in NM - Stage 3b Sep 2008, Stage IV June 2010 with brain and adrenal mets.

Carmon in NM: Stage IIIB 9/2008; Stage IV 6/2010 with brain and adrenal mets; NED since 4/13/2011. It’s not what happens to you, but how you react to it that matters. ~ Epictetus

Login or register to post replies.

Charlie S's picture
Replies 4
Last reply 4/18/2011 - 5:28pm

Come one and come all to chat.  Stage I to Stage IV most welcome.  

All cyber drinks are free and frequent.

Bitch, whine or moan are welcome as are the magic and wisdom  of tomorrow.

Be there. You will be glad you did.

Tuesday, April 19, 7-9 EST

Charlie S

Login or register to post replies.

awg's picture
Replies 4
Last reply 4/18/2011 - 1:02pm
Replies by: joy_, awg, Fen

Stage 3a Melanoma w/1 positive Superficial pelvic node, deep node was negative.

My plan consists of Superficial Node Dissection (open method) and 12months Interferon.

I am seeing studies and reports where the superficial pelvic lymph node dissection is being performed using robotic assistance via a small incision on the top of the upper thigh.

I am looking  for information on facilities that offer this method as well as form feedback from anyone who have had robotic assisted dissection.

I am also interested in hearing from open method pelvic dissection recipients on how the recovery went, lymph edema and the best method to manage the edema.

 

Thank you,

AWG

Login or register to post replies.

Nad T's picture
Replies 5
Last reply 4/18/2011 - 7:32am

Oh man, am I on the main board?  Being a Melanma push I am now a stroke push.

Understand the symptons - Respoind.

My arms are purple.

Now can I have my son back?

Login or register to post replies.

mrsmarilyn's picture
Replies 4
Last reply 4/17/2011 - 8:17pm

Hello Everyone.  My brother Gary going to SC in Nashville has been on the MEK/BRAF combo for about 2 months and is having frequent bouts of high fever and nausea.  He was on the Braf (GSK) initially and they moved him over to the combo - after the BRAF stopped working.  We were wondering if anyone else is having any similiar side effects, and how eveyone on this trial is doing.  On a good note-he has went from 7 spots - to only one stubborn one in the pelvic area.  Thanks and hope to hear from this oustanding group of brave people, we have grown to love and depend on.

Best regards,

MrsMarilyn

Sister of Gary Stage IV

Login or register to post replies.

Pages