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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Replies by: cancersnewnormal

Hi all - Haven't been on in a while but just wanted to share this news about my sister Leisa. She's had a heck of a year but, at this point in time, is again kicking ass against the monster.

A recent thoracic CT shows major shrinkage to all tumours. The doc doesn't make any reference to specific tumours mostly because there were only two areas where mel had not invaded (heart and colon) - it literally spread everywhere else.

She's also just had her first MRI of the spine (since beginning treatment) and that one was also rated "good." We are a bit ticked off that they are now referring to two fractured vertebrae (T12 and T5) - we always suspected that there was more than one fracture but docs never admitted it, however, the report states that these were both as "previously noted."

There's a brain scan scheduled for Dec. 1 - her main onc wanted to move it up but the radiation oncologist disagreed. We would've liked it moved up too because my sister is hoping to get her driver's licence back. She had WBR in May for brain mets "too numerous" to count. A followup scan this summer showed major shrinkage with nothing new. If the next shows the same, she'll be able to drive again - we only need two good back-to-back scans. She's never had a seizure and was never put on anti-seizure meds.

Interesting to note - the vetebrae that fractured have pretty much disintegrated and she has lost nearly two inches in height.

Regardless, she is feeling great, has begun an exercise program to build her muscles back (pretty badly atrophied at this point) and is even hoping she may be able to work a couple of days a week again this winter. 

So, we're a long way from NED however, she's still here - responding extremely well - and so far, defying the odds!! It's all "one day at a time," right?!

My heartfelt best wishes go out to all!!!!

Barb

 

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jms0104's picture
Replies 2
Last reply 11/16/2016 - 9:04am
Replies by: jms0104, Janner

Met with melanoma specialist at Northside Hospital here in Atlanta on Mon.  They went over my punch biopsy results for my stage 1a, .49mm, no ulceration, no mitosis, melanoma located on my side trunk area.  Recommendation was for WLE and no further tests or treatment.  I'm considering pushing for a sentinel biopsy or pet scan as an extra precaution.  I'm scared to death that this will come roaring back, although the doctor said the chances were only around 5% and that the chances of a node biopsy showing anything are also very slim.  It seems as though there are many folks on here who started out as 1a only to find stage 3 or 4 disease years later and I want to do everything I can to mitigate my risk.

 

thanks

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SOLE's picture
Replies 16
Last reply 11/18/2016 - 4:04am

in the case of ulcerated primary tumors? And possibly low node burden? Got back from seeing a second oncologist today. Textbook answers. Who can blame them? But the thing about interferon is new to me. Celeste?

He also told me that since my tumour was ulcerated, there are malignent cells in my bloodstream. Is this how it works?

I am afraid to post again here but what the heck, for those of you fed up, you can just pass me by.

For the others, I am truly grateful for your replies.

Sincerely

Sole

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 11/21/2016 - 9:54am
Replies by: Anonymous, Carole K, Jubes, jennunicorn

Good Morning everyone.

Short history... husband diagnosed stage IV 14 months ago, removed turmor and started Opdivo in November and ending treatments in April this year (12 treatments total).  All scans have been clear(thank god).  Since no additional tumors we really dont know if he is a responder to opdivo.  This past weekend he coughed up what looked like a clot mixed with mucus.  Doesnt see his Onc for a couple weeks still and no scans until December and didnt want to go to hospital.  Of course my first thought was a tumor in the lungs.  Any advice?  Im scared.  He's actually feeling better after 6 months of dealing with residual side effects from the Opdivo.. but now this.  Its keeping me awake thinking about this. 

R

 

Bin

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Jubes's picture
Replies 6
Last reply 11/16/2016 - 9:52am
Replies by: cancersnewnormal, Jubes

Hi all

i am seeing my doctor tomorrow to have sutures taken out and of course I will be guided by him, but just interested to hear if anyone has heard of any problems from someone flying after a keyhole lobectomy?

I was planning to fly to New York for Xmas to see my grandsons (a 10 hour flight and a 14 hour flight we are stopping in Seoul overnight) but it is only 5 weeks after my operation to remove the lower left lobe

the doctor called my family after the op and said it could not have gone better and wants to put it on YouTube to teach other surgeons the procedure. Apart from that I have virtually no pain. I was in icu 2 days after the op, then third day on the ward and got the drain out 4 th day home and since then just panadol. I taught the next day and went to a concert and gave a speech at my friends retirement. 

So I think it went very well. It's just gat if there were the slightest risk of collapsed lung or other complication I would put off my travel plans as I am not insured for a pre existing condition and I know how expensive these things are over there!

anne-Louise 

 

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denyserabbat's picture
Replies 3
Last reply 11/17/2016 - 4:34am
Replies by: Carole K, cancersnewnormal, Anonymous

Hello,

Earlier this year, a mole was removed from my lower leg that was melanoma in situ in Chicago  While there, I visited Dr. Shea at University of Chicago, whom I was referred to on this forum.  

I've recently moved back to Southern California (preferrably Orange County, as I live here, but don't mind going to LA) and need to find a new dermatologist that is top-notch and well-versed in the latest technology for skin/mole checks.  

Can someone recommend someone?  I see that UC Irvine has a Melanoma Center, so just curious to get the forum's recommendations.

Thank you in advance and I wish you all the best in your treatment journeys.  

Best,

Denyse

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Doug-Pepper's picture
Replies 5
Last reply 11/17/2016 - 4:36am

Doug is doing great! We have had a few scares over the last 6 years, but no melanoma has been found. I have not been on this page in a while. Hoping good news will encourage others. He had a place removed over 6 years ago & it had spread to 1 lymph node. Praise the Lord!!!!

"God is our refuge & strength, an ever-present help in trouble." Psalm 46:1

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adriana cooper's picture
Replies 3
Last reply 11/15/2016 - 4:16am
Replies by: debwray, adriana cooper

Is there a way to display topics (especially older topics) that have had recent replys at the top or at least to have a notification (email) when someone replys to an older topic (that may be pages down) or to the patient profile?

Thanks 

Rob

Adriana

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Kristi A.'s picture
Replies 8
Last reply 11/18/2016 - 11:25am

Hello Everybody.  My name is Kristi. I am 30 years old, married and have a beautiful 10 year old daughter. I've been following this forum since March.  I have learned so much from all of you here and I really appreciate it. I will try my hardest to explain all of this the best I can.

On March 22,2016 I ws diagnosed with stage 4 malignant melanoma.  I am being seen at Mayo Clinic in Rochester, MN. Here is the rundown of everything that has happened since then.

1. March 22 - diagnosed with metastatic disease involving the left axilla, subcutaneous tissues, lungs, and bone. Initiated immunotherapy with ipi/nivo.

2. April 14- went to ER with pains below right lung. Tumor had swelled up from first ipi-nivo treatment. Given pain medication and sent home after 2 days. Also told they found a lesion on my kidney.

3. May 12- admitted to hospital for profound fatigue, severe headaches, nausea / vomiting,  and fevers. Underwent a lumbar puncture after no infection was found and they found swelling of the brain, Aseptic Meningitis. Also, underwent surgery to have gallbladder removed after 3 stones were found. I was put on steroids and my fevers and headaches went away. This was a 9 day hospital stay.

4. May 27- reinitiated ipi-nivo but developed fevers and diarrhea, requiring steroid use.

5. June 22- decision was made to omit fourth dose of Ipi-Nivo and continue with just Nivo.

6. July 8-developed immune related colitis.  Stopped Nivo after one cycle and initiated steroids. Diarrhea gradually resolved and slowly tapered off steroids. 

7. September 7-PET scan showed complete response.  No tumors lit up at all. I was over the moon when  I heard these results.

8. September 9-reinitiated Nivo. Total: 3 doses of ipi-nivo, 2nd dose of just Nivo. 

9. October 7- PET scan showed progression.  Left axilla(SUV 3.5) and tumor in left lung(SUV 2.8) lit up again. Oncologist was unsure if the progression was caused by a break in treatment for two months or if cancer is just not responding any more. Decision was made to rescan in 6 weeks. If more progression is found, we will either restart ipilimumab or start braf/mek combo.  Was told they don't really want me to restart ipi because of the side effects I had on it before.

10. November 4-mentioned to oncologist that left axilla  seemed to be getting a little larger and noticed a couple of swollen lymph nodes in left side of neck. Oncologist decided to start Braf/Mek right away due to likely progression and keep me on Nivo in the meantime. Just waiting for my insurance company to approve the medication.

I guess what I'm hoping is that I can get some advice on whether or not I'm going about this all the right way.  I'm not going to lie.  I'm a mess and I've been trying so hard to deal with all of this but I'm beyond lost right now.  I have no idea if I should really be starting Braf/Mek so soon without a lot to go off of. I have had 3 doses of ipi-nivo and this Friday will be my 7th just Nivo treatment.  The lymph nodes are still a little swollen and left axilla doesn't seem to be getting bigger or smaller, just staying the same. I've been debating whether I should email my doctor to see if we should do another scan before starting Braf/Mek, or just wait for the meds and do that. I just don't understand how it came back so quickly after getting a complete response from the ipi-nivo.  

If anyone can help me understand this and let me know if I'm doing the right thing when it comes to the next step to take, I would greatly appreciate it.  I know all of you here are very knowledgeable about melanoma and I feel like your the ones I should be turning to right now. Sorry for the really long post. 

 

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keepthefaith11's picture
Replies 3
Last reply 11/15/2016 - 2:31pm

My dad had his 3rd seizure 10 days ago and just got out of the hospital today.

Thursday they decided to do the 1st scan after starting treatment. He has had 4 infusions of Opdivo so far. The scan was originally scheduled for the 25th, but with this latest development they moved it up.

Scan showed OVERALL IMPROVEMENT compared to the last scan! One tumor was slightly bigger but the doctor said this is possibly pseudo progression since the rest were smaller. She did mention possible minor bleeding as another reason. She did not seem concerned and we will continue treatment with Opdivo.

The neurologist said the tumors looked "diffuse" on the scan. What could this mean??

I assume this is good news right?? :)
I was not expecting much since it has only been 7 weeks since start of treatment. Would have been happy with stable at this point.

Does this improvement of the tumors mean that the therapy is working? Could you really see results this soon?

Annie

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jms0104's picture
Replies 6
Last reply 11/13/2016 - 7:32pm
Replies by: jms0104, Anonymous, Janner

I know my stage of 1a makes me very lucky, but I'm anxious nonetheless.  Dx last week with a suspicious mole on my torso, punch biopsy, stage 1a, .45mm, no ulceration.  I also have MS and have been taking an immunomodulator for the past 11 years, that I am strongly considering stopping.  Will I need a node biopsy for 1a?  Reading lots of horror stories with other Stage 1ers coming back at stage 4 much later down the road.  

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SOLE's picture
Replies 2
Last reply 11/14/2016 - 11:51am
Replies by: Anonymous, debwray

Dear warriors,

I said I would not post again but this is too important and I would like to sollicitate your participation.

As you all know, standard of care in Canada is dependent on the will and means of each provinces. At the moment, we even don't have access to ipi as adjuvant treatment for stage 3.

This survey, conducted by the courageous Annette Cyr from Melanoma Network of Canada, requires the participation of all Canadians melanoma patients but our friends from around the world can participate too, to show to our leaders here that we ABSOLUTELY NEED that therapy combo (Ipi/Nivo)  too...

I will try to post later on a direct link so that all of you have a chance to answer the survey.

In the meantime, here is Annette Cyr's email athe Melanoma Nertwork of Canada, if you have questions.

acyr@melanomanetwork.ca 

Please, as a gesture of solidarity, take the time to help us out in Canada.

Thank you for your time.

Best wishes to all.

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Again75's picture
Replies 18
Last reply 11/15/2016 - 9:50am

I was recently diagnosed with stage 4 metastatic melanoma.  I had what i thought was a cyst on my back that turned out to be a 3 inch tumor!! The tumor was fully removed with clear margins. I had CT Scans of my head, chest, and abdomen.  All those scans came back with no signs of spread to anywhere, they even said my lymph nodes looked good.  My LDH is normal and all my bloodwork came back normal.  I asked how I can be Stage 4 with no spreading and they said because of the Sub Q spreading and the size.  I am currently doing the 4 ipi infusions to hopefully keep it from spreading.  I am 41 and really hope to live a long time, but I keep letting this get into my head and think am I going to be around to enjoy my family, grandkids, retirement??  Any advice or long term survivors out there??  I could really use some positive encouragement right now.  Although, my family is supportive they keep saying "You will be fine"  I just don't think they realize how serious this really is!

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Allie's picture
Replies 11
Last reply 11/12/2016 - 10:16pm
Replies by: Allie, Mat, mjanssentx, Ed Williams, debwray, Anonymous

I've had 8 rounds of Keytruda and started having headaches and vision issues. I saw the eye doctor and had an MRI a couple of months ago, both showed I was clear and looked healthy.  Lately I've had tracers, lines and spots at random moments during the day. Has anyone had this? My next infusion is Monday. Thank you for any testimonies or thoughts. -Allie

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