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

Those people who are new to this bulletin board might not know that there used to be a thriving chat room here. It was so useful to me when I first discovered this place. I went in there and 'met' many of the people that helped guide me through my early days of interferon, many of them gone now taken by melanoma, and many of them just gone away from reading these boards.

I don't spend much time in there myself anymore, since it is so quiet, but I will often log in there and just minimize the window while I read the boards or check my facebook or news readers. And new people still come in there, sometimes even before they find these boards, and they are usually pretty happy to find someone to talk to who understands the diagnosis.

Anyway, Shelby has posted some suggested chat times in the chat room, so now when newcomers enter the chat room, they'll see some times listed when they might expect others. I hope this will help people who actually want to use the room find others of a like mind.

I see she's listed the times in Eastern Standard Time, each night at 8pm, and I'd like to encourage some of the long term members to try popping in there over the next few weeks to see if we can't encourage a chat room revival. I am often cooking dinner during the 5 O'Clock hour (I am pacific time) any of you night owls back east who like to get on late can look for me around 10 or 11 Eastern as well.

Dian

Login or register to post replies.

Anonymous's picture
Replies 2
Last reply 9/16/2011 - 7:30pm
Replies by: washoegal, lhaley

Hi,

This was written in a pathology report taken from a mole on my mid-abdomen.  I apparently have many of these moles. Is it malignant? Can someone kindly opine and suggest what next steps should be?  Should I be seeking a digital dermatascopy exam?

 

From report:

Diagnosis: Junction nevus, dysplastic type, extending to one lateral  margin.

Microscopic description: The dennoepidermal junction contains a melinocytic proliferation in which the melanocytes are disposed primarily in nests.  Many of  the melanocytes show mild cytologic atypia, bridge and fuse adjacent rete and are associated with a fibrosis of  superficial papillary dermis.

 

 

Login or register to post replies.

Steve in Detroit's picture
Replies 8
Last reply 9/16/2011 - 2:11pm
Replies by: Anonymous, JerryfromFauq, jim Breitfeller, chenrydh

The following was posted acidentaly by "kris herrington" in the "off topic" forum and I am re-posting for her. Thank you in advance for any advice for Kris

 

Hello all...

Got a big decision to make...and I'm looking for some advice.  I am stage 4. met in my lungs and abdomen, all over really. I just finished taking the BRAF Plexxicon drug in august, since being off the drug the mets have gone crazy and are increasing rapidly. I am BRAF V600K,  not V600E so they think thats why I may not have responded to the Plexxicon.  I was just rejected at the NIH for the TIL trial. So now my options are to start the MEK trial or start on Yeroy.

The trial doctor doesn't have any stats on the MEK except to tell me that people that did not respond to the Plexxicon did respond to the MEK, but couldn't tell me much more.

My oncologist tells me to start Yeroy that I need something different than a BRAF drug. I'm concerned about the Yeroy as it is very toxic and that the response rates are so low. I was told today that the overall survival was 2.1 months but that others, less than 10% of the people were out 1-3 years.

If I take the Yeroy now, it basically excludes me from any trials at this time if it doesn't work. All I got left is chemo and we all know this doesn't have great results.

I progressed slightly on the Plexxicon (2011)

Did not respond to IL-2 (2011)

Did not respond to Interferon (2009)

 

Soo I'll take any suggestions, advice, stories.. anything... HELP!!!

 Kris 

Login or register to post replies.

I am asking if anyone can tell me something about the dyes. I have done scans and scans for most of my life.

 

3 months ago I had a reaction and I itched and hived on feet, legs, truck, back face, and arms starting about 5 minutes after the CT scan. They treated me with a couple IV pushes of Benadryl and said next time I would need to be premedicated due to allergy reaction.

 

Yesterday I had my scan and I had to take Medrol 32 mg 12 hours before and then again at 2 hours before as well as 50 mg of Benadryl 1 hour before. The tech says the premeds usually always work in 99% of the patients...I drink 3 glasses of medium stuff that taste like gator aid...then after they do a couple run throughs in the machine they use a drip of Optiray 320. This time they started the drip and ran me in the machine and on the way out I was starting a serious reaction to the dye. I went into shock and it was an awful ordeal yesterday. Hives, itching, urge to vomit, bottomed out on BP , breathing trouble, blacked out, they pushed steroids and Benadryl in my line and some other things. They hooked me up to monitors and over a course of time  I had 7 adrenaline shots to the chest. I was trembling and shaking all over like Parkinsons.They had to monitor me so they admitted me and kept me on O2 and gave me zantac in IV as well. They wanted to give me Duladid but my hubby and I said no.

 

 I didn't even get to do my MRI or my Anti PD 1. My question is I had to reschedule my Anti PD 1 and MRI...and the nurse says I need to take the premeds again. It had to be on the first drip of the CT dye I had reaction....now I am scared because of the MRI dye...anyone know if I will end up in shock again??-  Dr W says I need to be certified as allergic to Iodinated  radio contract dyes and Optiray320 and I should never take the stuff again...why would I need to be premed again for the MRI? Isn't it also an iodinated dye?  It was so close to death yesterday and if one drop in my vein can do that what is going to happen if they use it again for the MRI? Do they have a substitute dye for people who are allergic?- Lynn

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

Login or register to post replies.

newmanmark's picture
Replies 5
Last reply 9/16/2011 - 9:30am
Replies by: Anonymous, jax2007gxp, akls, EmilyandMike, DebbieH

Hello all,

I posted last week about a lump that I discovered on my elbow.  I met with my oncologist yesterday and he is not overly concerned.  He thinks that it is likely connective tissue as the tip of the elbow is not a usual spot for lymph nodes.  He told me to monitor it for now.  I'm feeling much better after that!

I know that there will likely be many more scares to come.  I need to learn how to manage the fear and anxiety created by these experiences.

At this time I would love to hear from any stage 3 patients who are continuing to live with NED!  At times it feels inevitable that I will have to deal with melanoma again.  I try not to think this way but its difficult.  I have a 1.5 year old daughter with another child on the way.  The thoughts of potentially leaving them devestates me.

Mark (Stage 3C)

Login or register to post replies.

Gracie's picture
Replies 3
Last reply 9/16/2011 - 6:31am
Replies by: jim Breitfeller, Lisa13

I am scheduled to begin IL2 Monday morn.  I was on the ipi/placibo trial study for 14 months with minimal side effects if any, as Stage 3b.  I had no tumors till now.  Presently I have 2, one in lung, one on chest wall.  I was unblinded today and yes, I was getting the ipi.  I guess you would say, "I am not a responder."  So now we try IL2.  My doc says that the side effects will be more intense coming from the ipi, possible bowl perferation.  I will have a colonoscopy tomorrow to check for weaknesses or inflamation in bowel from ipi and treat colon with steroids for two weeks before IL2 if necessary. Doc has been attempting to talk to mel oncologists around country with patients on IL2 from ipi.  I was hoping to hear from someone on the board sooner.  I am having second thoughts about doing IL2.

Have any of you experienced IL2 after ipi?

How were the side effects for you?  perhaps more intense?

Were you a responder to IL2?  (Doc said it was more my "chemestry" that prevented me from responding rather than a "shelf life" of ipi over 14 months)

does anyone know if you don't respond to ipi you are as likely to not respond to IL2?

Has anyone experienced a bowl perferation and what is the long term repercussion?

I am very thankful for this board and all of you...a safe place to go during this time when I lay awake at night thinking of questions I forgot to ask doc. 

Gracie, stage 4

cancer is in my life, but is NOT my life

Login or register to post replies.

Shelby - MRF's picture
Replies 1
Last reply 9/15/2011 - 11:54pm
Replies by: JoshF

Don't forget to register for our FREE patient symposium in Chicago, IL on October 1, 2011 at the Hilton Garden Inn - Downtown/Magnificent Mile.  Registration and breakfast will open at 8:15 am and the symposium will begin at 9 am.

Dr. Howard Kaufman at Rush University Cancer Center has assisted us in planning a wonderful and informative agenda for the day!  Use the following link to learn more!

http://www.melanoma.org/get-involved/1st-annual-chicago-melanoma-patient-symposium 

Login or register to post replies.

Anonymous's picture
Replies 2
Last reply 9/15/2011 - 11:30pm
Replies by: DonW, dian in spokane

I was diagnosed 2006 with .55, clark's level 2, with lateral and deep margins involved.  Upper left arm.   About a month ago I noticed a lump on the left side of my head above my ear. It is completely painless.  I was visiting my rheumatologist today (rheumatoid arthritis) and showed it to him.  He said it is large, at least 1 cm and that he thought I should have it biopsied.  I called my derm. and will see her Wednesday morning.  Any thoughts?  Similar situations?

Login or register to post replies.

devonfh's picture
Replies 1
Last reply 9/15/2011 - 10:18pm
Replies by: FormerCaregiver

Please let me know if you have had any serious side effects from ipi

Devon

Login or register to post replies.

emilypen's picture
Replies 4
Last reply 9/15/2011 - 8:20pm

Hi All,

My hubby had his 4th IPI infusion last Thursday. We've noticed that typically 7-10 days after an infusion he gets tired, achy and his sub q mets swell up, get sore to the touch and very hot. However none of them have completely disappeared. A few have gotten smaller, but every day it seems that more are popping up across his torso and back.

Now on day 4 after the infusion, he's incredibly achy, sore and fatigued. He says everywhere hurts and we've had to up his morphine to help him sleep.

He also has bone mets, but he says the pain is not the same as the bone mets pain, this is more sore and achy rather than sharp and overwhelming.

Just wondering if anyone else has had a similar response? Our onc says he hasn't seen it before but is keeping an open mind.

Also wondering if it's more likely that mets in the interior of the body rather than the fatty areas might react before the sub q's?

 

And lastly, our onc also said that this may be the last treatment available for him, as if IPI does not work he may be too sick to qualify for another clinical trial.

We've already tried;

Dacarbazine

MEK/P13k

BRAF inhibitor

IPI

Radiation

I've mentioned trying IL-2 after IPI , but because of the toxicity our onc is concerned he may not qualify for the treatment.

 

Any suggestions are welcome.

 

thanks

Em

 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 0

Please let me know if you have had any serious side effects from ipi

Devon

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 0

Please let me know if you have had any serious side effects from ipi

Devon

Login or register to post replies.

j.m.l.'s picture
Replies 5
Last reply 9/15/2011 - 8:02pm
Replies by: Anonymous, Lisa13, AlanM, j.m.l., jmmm

Thank you all for your advice and best wishes. Thurs. I start IPI for first round. Have stage III mela. and spreading. Newest tumor on vein and nerve cells. Had 4 prev. operations but now time for systemic help. ANY HELP FOR DEALING WITH TREATMENT, ETC GLADLY WILL BE READ.

Login or register to post replies.

Gene_S's picture
Replies 1
Last reply 9/15/2011 - 6:34pm

See: http://www.oncologystat.com/news/Trial_Assesses_SLNB_s_Future_in_Melanoma_Management_US.html

Best wishes,

Gene and Judy ( loving wife and care taker)

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

Login or register to post replies.

Replies by: mombase, lhaley

Today is Day 15, last of the treatments. We wait about 2 months before she is rescanned to see if there is any impact and if there is any spread of the melanoma in her spine. It's been a very benign treatment, especially compared to brain radiation. The daily trek to the radiation center was about the only downside, but we got to know a part of Seattle we had not spent much time in before (Ballard - an old Scandanavian part of the city that is now a hip, active and interesting destination).

She still has some pain in her lower back where they identified a large tumor (separate from the area where they found 12 tumors and believe the cancer is coating the epidural walls), so apparently no shrinkage of the tumor has occurred yet. The treatments themselves were short - about 12 minutes - we got there at 11:30am each day and usually we were out by 12:10.  She experienced no pain as a result of the daily treatment or any skin irritation. She didn't like that the room with the machine was kept at 64 degrees because of equipment sensitivity - even though she got blankets and wore socks and mittens. After each treatment she would be unsteady for a while - I suspect because of the impact of radiation on nerves controlling lower extremity function. They would resolve by the late afternoon, but she did have one fall when I could not catch her - fortunately only skinned and swollen knees and a bit of neck whiplash.

It is a very expensive treatment (I haven't seen the total bill, which insurance is covering, but I believe it is at least $60,000). But given that 3 weeks ago we were told it was untreatable, and continued growth of the cancer would lead to a lot of pain and paralysis, it's kind of a miracle, and will buy her some time at a good quality of life.

There is no rest for the wicked however - Friday she goes in for a brain MRI with the results visit on Monday - a follow-up to her Gamma knife brain radiation from five weeks ago. They are checking to see whether that treatment had any effect and to see if there are new tumors. 

Nick

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

Login or register to post replies.

Pages