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.

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NicoleinVA's picture
Replies 5
Last reply 9/21/2011 - 10:15pm

Hello,

I had a WLE and SLNB on 8/11; thankfully the SLNB was clear and at the beginning everything healed very well.  The WLE was done on my lower left outer calf.  They were able to close w/o skin graft and first three weeks all did well.

The incision on my leg re-opened in the middle two weeks ago and I'm told it will have to heal from the inside out.  I just finished up a 2 week dose of Keflex for minor infection and keep in wrapped.  I clean w/soap & water 2-3 times/day and first was using thick coat of bacatracin and now have been given saline solution.  I clean, soak gauze pad w/solution and re-wrap, doing this 2 -3 times/day.

Has anyone experienced anything like this and if so, do you have any advice?  I go back to derm in 2 weeks for another skin check and have to have at least 2 moles removed.  I'm hoping to recover from this surgery before I start w/more stiches.

Thanks for any advice you can offer. 

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MariaH's picture
Replies 2
Last reply 9/21/2011 - 9:44pm
Replies by: MariaH, JerryfromFauq

I have a question to others who have done IL-2:  Has anybody else had tunnel vision as a side effect?  One week after Dave completed his first week of IL-2 he had an episode of tunnel vision that lasted about 20 minutes.  He checked in the following Monday for his second week of IL-2 and reported this to his onc, who ordered a brain MRI.  This came back clear.  His last dose was on Thursday, and Sunday it started again and has been consistent.  He contacted his onc, who said it could be from brain swelling.  Has anybody else had this side effect?

Blessings to all the mel warriors out there,

Maria

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vickykay's picture
Replies 11
Last reply 9/21/2011 - 7:16pm

well, no nausea, but I have chills, headache and very much fatigue. I wanted to know if everyone who has interferon has to be stuck with a new iv everyday?   I am afraid I will run out of good veins.

 

 

 

 

 

 

 

 

 

 

 

 

 

/

 

Stage 3b - will start interferon Sep. 19th. Started interferon Oct.2011. Received three weeks everyday with very bad side effects. Stop high dose everyday and started shots. Had to stop after one injection, vomiting blood. Had Ct, came back clean.

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URGENT – TODAY – Person with history of tanning needed for D.C. Interview Opportunity 

For today (Wed, Sep 21), a Washington D.C. area TV station would like to interview a local person who has had melanoma and can speak to the dangers of tanning in relation to a new DC regulation that would require minors to get permission from their parents to use a tanning bed.  If you’re available between 4:30 p.m. and 8 p.m. today, please contact Jenni Glenn at 202-591-4013 or jenni@jpa.com.  We appreciate your help educating the public about melanoma and the dangers of tanning! 

Thank you!

Shelby - MRF

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mwb1010's picture
Replies 10
Last reply 9/21/2011 - 1:14pm

hello....can anyone help me...I have been diagnosed with
melanoma and have had a wide excision and sentinel node biopsy. the
results of the snb came back with nothing present in the lymph
nodes...The depth of mine was 1.02mm but was all taken out with the wide excision. Does anyone know if I have anything to continue to worry about....I know that melanoma can come back anytime but I am still very nervous and my surgery was back in December 2010.  I know that there are people that are in a worse condition as I am but am I stressing myself out? Thank you in advance..

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eaca's picture
Replies 3
Last reply 9/21/2011 - 12:35pm
Replies by: eaca, JerryfromFauq, King

Since I haven't found a lot of information on others using pegylated Interferon on this board, I thought I would just post my experience with starting it on Friday, to share with others.  I'm stage IIb and on a clinical trial combining peg-intron with a peptide vaccine. I give myself Peg-intron injections once a week and the vaccine is given by the Dr once every three weeks, all of it lasting 6 months.  So my first injections were on Friday afternoon and I experienced what I gather are the typical interferon reactions of severe chills, aches, headache and fever starting about 5 hours after the injections.  It was a pretty miserable night, as I kept waking up to more aches and fever or to go to the toilet because I was drinking gallons of water.  I was taking Tylenol and as my Dr said to steer away from Ibuprofen, I was concerned about reaching the dosage limits. The effects were so bad that I really felt I needed more Tylenol after 4 hours, but then if I kept up that pace I would have run out of options before 24h had gone by, so I slowed down a little.  The effects peaked probably around 10 hours after the injections, but I stayed pretty miserable most of the day on Saturday until about 24h after the initial shots.  I had some slight nausious feelings, but by eating small amounts I was able to keep that under control.  Then I finally managed to get myself up and showered and dressed to go see some friends in the evening.  The second night was much better already and the second day has been very manageable, with just a few remaining aches and vague fuzziness in the head.  So here's hoping the coming weeks don't get any worse.  I'm going to ask my Dr about other alternatives to Tylenol in case I need more of something on the first night.  Otherwise, I'm determined I'm going to do this!

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Anonymous's picture
Anonymous
Replies 3
Last reply 9/21/2011 - 11:43am
Replies by: Tim--MRF, Anonymous, FormerCaregiver

He is in south korea, suffering with Melanoma.

I'm wondering if he can get Zelboraf.

He is going to find out if he can get as he stay in South korea, otherwise he is going to travel to the states.

Is there anyone who knows how to get Zelboraf from overseas.

Thank you so much for reading mine and your comments in advance.

Peter..

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The followig is provided by Nicole's friend Donna:
 
"Nicole comes from country Nsw and her family may not post an obituary in the major daily.  I have begun searching the local newspapers to see if they have placed an obituary in one of them.
 
The service is on Australian Friday 23 September, which I believe will occur on your Thursday.  Just to ensure I have that correct it is currently Wednesday 21 September 7:39pm here.
 
Friday 23 September 2011
10 am
Collier Trenerry
202 Yambil Street,
Griffith NSW 2680, Australia
 
Some one posted the following on Nicole’s facebook page
For those of you who can't go to Nic's service, like me, I thought you might like to know that I called the funeral home and Nic's family is accepting both flowers and also donations to Melanoma Research.
http://www.melanomaresearch.com.au/ and http://www.melanoma.org.au/ are 2 possible options.

 "
I'm me, not a statistic. Praying to not be one for years yet.

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cwu's picture
Replies 9
Last reply 9/21/2011 - 1:16am
Replies by: JerryfromFauq, Anonymous, FormerCaregiver, cwu, Lisa13

Hi,

My father is 83 years old and was diagnosed with Stage III melanoma which originated in the sole of his foot.  He had surgery a year ago and his cancer came back in the form of lesions on his calf this year.  There are hundreds of them and scans showed that it hasn't metastasize to his organs. He tried a targeted chemo drug, Dasatanib, but it didnt work after two months. He has a c-kit mutation.

We now have two options, Yervoy or DTIC/Temodar.  His oncologist recommends Yervoy however the side effects seems so scary.  I have been learning everything I could about Yervoy but dont know as much about DTIC/Temodar. Yervoy seems to offer the hope of prolonging life longer but I also saw somewhere that it works on only about 15%.  Does any know the statistics for DTIC/Temodar (I am an accountant so my instinct is to look at the numbers first :-) ). 

If you have tried both DTIC and Yervoy, please let me know how they compared and what worked for you. Also, does it make a difference which treatment you should try first?  Thank you.

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Lisa13's picture
Replies 4
Last reply 9/21/2011 - 12:37am

On Thursday, I have my 3rd infusion of Yervoy. Other than a faint rash on my chest, itchy skin and some abdominal cramping, I havn't had any symptoms.  When I see my Dr. tomorrow, I plan to ask what my absolute lymphcyte count is so I can see if my immune system is responding. That being said, do you have to have symptoms in order for this to work? I read on another website that the stronger the symptoms on yervoy, the better the response.  Is this true??  Are there any complete responders who had little to no symptoms and it worked?  I hate not knowing what's going on inside my body, but I'm hanging in there and hoping for the best.

Lisa

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

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Anonymous's picture
Anonymous
Replies 7
Last reply 9/20/2011 - 8:32pm
Replies by: Anonymous, EmilyandMike, MaryD, Napa K

Hi,

I am moving to the San Francisco area. I am stage 4 and need the best ONC I can find.

Sincerely would appreciate any recommendation for Melanoma Specialist ONC at UCSF Cancer Center or any prominent Melanoma Specialist close to Bay area. 

I am hoping to find an ONC & Medical Center that is conducting melanoma clinical trials.

Thank you so much for your help.

Barb

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life is good's picture
Replies 1
Last reply 9/20/2011 - 11:05am
Replies by: MariaH

Hi there,

 

My name is Saskia, and I'm living in the Netherlands. My sister has been diagnosed with Melanome stage III (I think... I'm not really familiair with the staging of melanoma) in 2006. After an operation where here melanoma and her lymph nodes have been removed she seemed 'cured' (of course we were told that 'cured' was a bit of a strange way to express her stage, but free of cancer for the time being...)

In 2010 the cancer was back, mets in her lymfnodes in her abdomen. After the standard chemo, she was treated with ipilimumab and after 5 treatments it seemed to do nothing anymore. So time for another action!

She has no B-raf mutation and now she is eligible for the young TIL-therapy. The experience with this treatment in the netherlands is very small (she would by the fifth patient...) and we know that the treament is gonna to be very hard.

Has any one of you experience with this treatment and could you please share this with me?

 

Are there any other options after this for my sister?

 

Best regards and thanks for your ansers!

 

Saskia

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NYKaren's picture
Replies 8
Last reply 9/20/2011 - 5:10am

Sorry I haven't posted since I went in last week...

Here I sit, scratching myself silly, giving you the high/low points of the treatment.  Going back in tommorow.

High points:  Never got the extreme chills/tremors.  They could definately happen this week, though.

Didn't get diahhrea till the day before last.  Lomotil took care of it right away.  I think it's because I went in constipated.  .   Hint, if you think you have to go, unplug yourself and get in there!

Didn't vomit.

Didn't halucinate, thank G-d.  I was really scared about that one.

NEVER had low urine output.  They were amazed.  I highly recommend bringing a case of water--it really helps.  Toward the end, when I couldn't eat, lived on water and bananas. Besides, my throat was so dry and lips peeling that I had to keep sipping water.

It was hard getting the Picc line in, they bent two (needles, wires, whatever they were)  By the end of the week, I wanted to rip it out myself.  There's got to be something else that doesn't itch so much as the patch/tape they use to secure it, and tomorrow I'll find out.

Low points:  My skin was lobster red (but didn't peel.)  Itch was and is so bad, nothing relieved it. was so swollen that at times one eye closed.   Not Doxipin, not Adarax, not Zyrtec.  In the hospital a shower followed by Sarna helped for about 10 min.  Ditto for home and oatmeal baths.  Just sent my hubby out for Tide Free & I'm rewashing everything today.  I just cut all my nails off and the skin is all peely underneath.  yuk.

Definate confusion which still hasn't cleared up yet.

 As mentioned, extremely dry throat and peeling lips.

Blood pressure did get low, so did potassium.  They're quick to remedy that.

I gained 35 lbs. of water.  As soon as the 2nd day, my underwear was so tight I had to cut it w/scissors on the legs & waist.  This time I bought 2 packages 2 sizes larger. Took off wedding ring and watch on first day.

I have to say, Dr. Sznol was there 1-2X/day, every day.  What a dedicated man.

Recovery: Exhausted and itchy.  Appetite came back pretty quickly, strength did not. Balance was horrible.  When we went for my check-up this past thursday, my husband parked the car, I got out my side, and promptly walked into a parked car.  When I saw Dr. S., he asked what % of normal I felt.  I said 60, and if he expected more, he was out of luck.  He laughted and said as long as I felt 60-70%, i was fine to go back in.  The important criteria was my labs, and apparantly they're fine.  We got home Sun. around noon, and I slept almost 'round the clock till Wednesday-Thursday.

I'm scared about the upcoming week because I know it can be so much worse.  Also, since I did ipi & had the requisite side-effects, I kept asking him if I wasn't having enough, because with ipi, it's believed that the presence of side effects means that the body is responding.  He said with IL-2, it's not the same and of course I did have some, just not the major ones.

Oh yeah,  I did in the hosp. & will continue to put Aldera on the area every night.  Interestingly, that skin is now painful, red and scabby.  They're very interrested in the result of the combination of the IL-2 & Aldera, and so am I!

So  I think that's it for now, sorry for not keeping up earlier.  I really lost interest in everyting, didn't even check Facebook.

One last thing, so grateful to have my husband there; he was wonderful!

be well everyone,

karen

 

Don't Stop Believing

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Wally's picture
Replies 9
Last reply 9/20/2011 - 3:03am

Hi all, I have posted on previous occasions and am now totally confused and possibly paranoid but I really do not know what to make of these developments so I need to rant and rave.

About a month after the malenoma tumor was removed from my right lung in April 2011, I started developing pain in my ribs, initially on the right side close to where the tumor was. In July I felt that the pain was no worse but consistant and very eratic and would move accross my ribs at times. Although initially the bones felt sore when I pressed my fingers on them, this is no longer the case. The pain is pretty severe at times and seems to stem from somewhere behind my ribs. It is like a severe stitch and other times like a stabbing pain and again at other times it feels as if it is on fire.

A Tc99 m MDP Three Phase whole body bone scan was done that indicated possible osteoblastic skeletal metastases with a proviso that recent surgery could also have been responsible. However, the pain continues. I was given a nerve block as the doctor who removed the tumor again indicated that the rib may have been damaged during surgery. Also apparent uptake left occipital need further evaluation to exclude metastasis in view of rib lesions

I went to my Oncologist on 7 September and a blood count was taken. This was clear / normal. Just to make sure a further scan was ordered. I only had a pre-scan to identify possible lesions. Nothing came up so no further scan done. The verdict being that the scan indicated a possible clean break of the rib during surgery.

I will now be have the ribs strapped (like rugby players have done when they injure their ribs) tomorrow (Monday)

My question is - can it take so long (some 5 months later still in pain) for a rib fracture to heal? Are the pains I am experiencing in line with a rib fracture. Surely any unusual movement, a cough or heavy breathing should induce pain. Surely pressing against the ribs should be a painful experience? I have none of this, just a constant pain that comes and goes as it pleases and is not isolated to one spot. This makes no sence to me. I do not want to sound like I am wishing that there is someting there but I just do not feel comfortable that they have done all they could to determine without any doubt whether or not I am disease free (NED) for now.

I just need to have closure on this topic and any feedback will be most welcome. I have had no treatment at all up to now, which is a blessing, but I am so afraid that there may be something lurking inside me that has not been picked up as yet and that any procrastination could be to my detriment. Is there anything else that can be done or is there anybody on this form that has had a rib tumor following a lung tumor. How was it identified - pain or any other way? Please help me.

I thank you all for your support. God bless. Wally.

The sun shines at the dawn of each new day even though it may not always be visible.

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Anonymous's picture
Anonymous
Replies 0

Is anyone aware of a Yeroy and MEK trial?

Or has anyone thought of combining the two drugs? can anyone offer any advice or knowlege to this,

 

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