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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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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lmccann2016's picture
Replies 4
Last reply 11/12/2016 - 4:51pm

Had wle and neck disection to left side of neck removal of all nodes that side. I am getting really concerned it's been 5 days swelling hasn't reduced and when u touched the swollen area it is hard. Has anyone had this recently and help me not worry. No fever. Just extremes tightness and swelling

Lisa McCann

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slouttit's picture
Replies 15
Last reply 11/12/2016 - 10:52pm

I was diagnosed as stage IIIa in early 2016 with a 1.5MM primary on the ear tip, no ulceration, 4/sq mm mitatic rate.  After a removal and SNLB, 2 of 5 nodes had micrometatasis (.65 and .7mm).  I then had a CNLD of the neck and all 50+ nodes were clear. 

I entered the interferon/pembro clinical trial and drew the interferon arm.  I only lasted one week on interferon but am still being watched closely.  My July CT and PetScan came back clear.  My next CT is scheduled for Nov 17. I have not had an MRI. 

As Ipi is not yet approved for stage III in Canada, I'm wondering if it worth my while to travel to Seattle for treatment with IPI?  Any thoughts?  iF so, who should I see in Seattle?

Also, I've been having mild headaches for the past two months.  At my last appointment with my oncologist he thought this was not a problem as I would find the headaches getting worse.  However, the headaches keep coming. I will see my oncologist next week and will ask if I should have a brain MRI.  I also will see my eye doctor as  hopefully the headaches are related to vision changes.  Otherwise, I feel fine. 

Thanks for your support and advice. 

Stacie

 

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kltann95's picture
Replies 21
Last reply 11/14/2016 - 9:47am

I have been hesitant to put this is writing because somehow that seems to make it more real. My husband was diagnosed with stage IV melanoma on 10/05. We could have been knocked over with a feather, he has no family history and no places on his skin. It has been a whirlwind of appointments and tests and I still don't know if we have our minds wrapped around it. I am sure I don't understand all of the terms and abbreviations so this may come across as ignorant but I am learning as we go.

What we know is that he has multiple lesions (my guess is under 12) on his liver (suspected as the point of origin), spread to underarm lymph node on left side, one 1.9 cm tumor on his bladder, and recently found 3 2mm lesions in his brain.

He just started immunotherapy with Opdiva & Yervoy, only one treatment down so far.

The biggest issue is the headaches, they are somewhat controlled or manageable with steriods but our oncologist says steriods hinder the treatment so... that's another thing. He is currently taking 4mg of prednisone a day.

We have 6 children. The youngest one just graduated high school and this was about to be our time. We had settled into grandparent mode and were ready to be in low gear. I know we have a lot to be thankful for, I'm hearing that the numbers and sizes are good but I just feel so lost.

I guess I was hoping somebody could offer some quick education and hope.

 

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debwray's picture
Replies 6
Last reply 11/17/2016 - 11:21am

Hi Folks,

Started Ipi nivo week last Monday.  Bloods on Mon showed CRP had leapt from 19 to 50 in a week ( or about 5 times normal cut off ) Still on antibiotics following surgical wound infection but after 2 months of high dose antiiotics that should not be impacting on the values unless side effect of drugs ??

Not much to shout about by way of obvious side effects so far, but have noticed an increased tenderness around the liver area where the melanoma has spread to. Has anyone else noticed this when starting treatment  and is this a good sign or is it more likely to be disease progression causing it ?

Hoping that inflammatory markers aren't flagging up side effects brewing up. Taking my Vit D , omega 3 and probiotics...... 

Any insights welcome

Deb

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laulamb's picture
Replies 7
Last reply 11/10/2016 - 10:16am

Hello everyone,

Looking for any advice, April 2016 diagnosed Stage 3a, had 4 infusions of ipi at 3mg.  Just had 6 month CT scan and results came back with "indeterminate 4 mm left lower lobe pulmonary nodule".  I have only talked to the Dr through email but she has said what they are describing are normal variations.  I'm not buying that though, could this be melanoma?  I am really in a panic right now.  Any opinions are very much welcome! 

Thanks,

Laura 

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_Paul_'s picture
Replies 11
Last reply 11/17/2016 - 8:20am

Hi Everyone,

I haven't been on here much for the last year. I got this odd idea that I should get busy living. So I did some of that, went to Machu Pichhu, worked hard, met a simply fantastic girl, who is now my fiancé.

However...

My mel had other plans. About three months ago it woke back up. So I started an OX-40 trial (https://clinicaltrials.gov/show/NCT02410512). But all that did was piss it off. So now its all over the place (sub-q's, adjacent to heart, small intestine, more in lungs, more in liver, chest wall, etc.). If I knew what a ying-yang was, I'm sure I have it up the ying-yang too.

My onc is presenting me three options:

https://clinicaltrials.gov/show/NCT01307267, PF-05082566 alone or in combo with rituximab,
https://clinicaltrials.gov/show/NCT02655822,CPI-444 alone or in combo with atezolizumab,
https://clinicaltrials.gov/show/NCT01807182, TIL.

I am leaning toward the TIL, for the simple fact it is the only one I really know much about. However, I am not super excitied to experiance the side effects.

Any thoughts oh board of collective experience and wisdom?

- Paul

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 11/9/2016 - 4:54pm
Replies by: debwray

Does anyone have any info on maxillectomy?  Diagnosed stage 4 melanoma back in 2014.  Mel spread to sinus cavity and upper maxillary.  Done the interefron, IL-2, Yervoy & Nivo.  Currently in a genetic clinical study.  Showing some improvement but not at the point we had hoped to be by now.  Dr. says to keep moving forward with trail as he feels we're moving in the right direction.  The hope here is for tumor in upper maxillary to get small enough to have surgery and a maxillary obturator to be done.  From what I'm ready about this procedure scares me to say the least.  I'm having issues with the maxillary area and in constant discomfort.  My feeling has always been to get the cancer out, but again, this is such a horrifying thought!  Please, any insight is much appreciated. 

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lmccann2016's picture
Replies 4
Last reply 11/9/2016 - 5:10pm
Replies by: lmccann2016, SOLE, debwray

HI everyone

I'm home and best rest had my WLE and neck dissection Nov 4th. Drain tube came out today recovering good.

Doctor talk to my husband after surgery I won't talk or see doctor until Nov 17th hope path report back by then. Anyhow he said I have a great chance of beating this surgery was success and I won't need radiation or chemo however will require immunotherapy which will be discussed on final path report.

One day at a time... just thought I would follow up and say thank you to all for ur support and crossing fingers it was just one lymph node and not more than that as we knew one was positive from fine needle.

Feeling ok tired no energy and in a lot of pain but nothing meds and rest can't help with. This wasn't as bad considering I had pregnancy worst then this surgery. The surgery was very comprehensive but I had a great doctor who is actually chief of oncology so I fell confident I am in good hands and which treatment is suggested be what I need to fight this demon away.

Much love from Canada Lisa xo

Lisa McCann

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