Please Check In! How is everyone doing?

This moderated forum is to support the needs of patients with stage IV melanoma, as well as to answer questions about treatment options and what to expect.
Catherine Poole
Posts: 11265
Joined: Wed Jan 02, 2008 12:09 am

Please Check In! How is everyone doing?

Post by Catherine Poole » Mon Nov 13, 2017 7:57 am

Haven't heard from some of you in a while and I hope it means you are doing well. please check in and let us know! For my check in, my partner is not well and it is a sad time heading into the holiday season. I don't know what tomorrow holds but no one does. So trying to practice what I preach and that is to live in the moment, in this breath, not the next breath or the past breath (Jon Kabat Zinn quote) Thinking of all of you.
Catherine M. Poole, President/Founder
Melanoma International Foundation

Dianap
Posts: 52
Joined: Fri Jan 11, 2013 1:40 pm
Contact:

Re: Please Check In! How is everyone doing?

Post by Dianap » Tue Nov 14, 2017 7:45 am

Hello Catherine,

I have meant to check in for a long time and regrettably, when I do, the first thing I read is the extremely sad news concerning your partner. I am so sorry x Words never seem enough so a big hug is sent from me to you.

Whilst I hate to tempt fate - so far so good...I am currently being reviewed with 6 monthly CT scans without contrast. Unfortunately, I developed a severe reaction to contrast dye and once I realised it was the dye causing my problems I had no alternative but to firmly refuse it. Since then I have no reoccurrence.

As you know Ippi worked wonders for me as the tumours have visited a variety of organs and even reached the final destination of my brain. I am now going towards my 5th year with one course of infusions and no other treatment apart from various surgery.

I continue to enjoy my Norfolk country/seaside lifestyle, having dropped out from a far busier environment.

With very warm wishes to you, your family and members.

Diana
Norfolk, UK

candi13
Posts: 6
Joined: Fri Jan 24, 2014 1:56 pm
Contact:

Re: Please Check In! How is everyone doing?

Post by candi13 » Tue Nov 14, 2017 10:16 am

Hi Catherine,

It's been years since I have posted on this forum but I read posts everyday.

You probably don't remember me but I was fighting melanoma with Patti & Jonathan years ago. I was fortunate enough to get into the Merck MK3475, phase 1 trial, which is now known as Keytruda.

I started that trial in 12/2011 and I was Patient #4. Today, I have been "cancer free" for over 5yrs and remain on this trial in an "observation" status. I have scans every 6 months and I am very blessed that Keytruda was my miracle drug. I hope some other long time followers like Jonathan post to give others hope that you can BEAT Melanoma.

God Bless You, Catherine for all the help you give to Melanoma patients.

Be Well Everyone,
Candi

Catherine Poole
Posts: 11265
Joined: Wed Jan 02, 2008 12:09 am

Re: Please Check In! How is everyone doing?

Post by Catherine Poole » Wed Nov 15, 2017 8:09 am

So good to hear from both of you! Diana, I am so happy to hear you are doing well and enjoying life. My journey continues with my partner as he is still hanging in there but not doing well. Working with patients here keeps my spirits up!

Candi, of course I remember you and I am thrilled that Keytruda worked for you! As it did for Jonathan but sadly not for Patti.

I hope we will hear from more of your old timers! It gives such promise to others.
Catherine M. Poole, President/Founder
Melanoma International Foundation

Jonathan
Posts: 991
Joined: Fri Apr 23, 2010 5:42 am
Contact:

Re: Please Check In! How is everyone doing?

Post by Jonathan » Wed Nov 15, 2017 9:10 am

Hi Catherine,

Sorry to hear of your struggles, and can only wish you comfort and strength.

I'm healthier than I've been for many years, and will always remember that your advice helped get me on 2 drugs that saved me in the nick of time in 2013-14 (Pembro/Keytruda being the biggy). I have watched as new developments since then have matured, so that hopefully many more patients can get the benefits of immunotherapy.

I see around 4 melanoma survivors in our area fairly regularly for coffee or lunch, and we all are amazed we're still here. When we were first diagnosed, there was nothing for us except surgery.

Lately I've gotten very involved in a trial of weekly "telemedicine" conference calls for cancer patients with recent ostomies (I woke up from my major surgery with one in horror, and told the surgeon at that point I didn't want to live - a shocker, but things change). We act as advisors or peers guiding people through their adaptation. A lot are very sick, and it can be very moving, but clearly helpful.

Take care everyone,

Jonathan

JBunyan
Posts: 96
Joined: Thu Jul 24, 2014 12:44 pm
Contact:

Re: Please Check In! How is everyone doing?

Post by JBunyan » Wed Nov 15, 2017 1:41 pm

Hi Catherine
We all pray for you and your partner.
I had Grade 4 on my forearm in 2008, metastasised to Stage M 1 (c) in Oct 2012 with mets in various places including 2 in brain later. Had a large one in hip area surgically removed followed by electron radiotherapy, then Gamma Knife for the 2 brain mets in Dec 2013, also started usual 4 doses of Ipi, finishing in Jan 2014. Since April 2014 have been NED in total remission and CT scans reduced from 3 monthly then 6 monthly and now stopped. Brain MRI also reduced now to yearly. My oncologist says that if you are NED after 3 years following Ipi if it works for you, then the risk of a recurrence is low, so my 3 years and 7 months is hopeful.
A lucky Ipi responder; I was refused the Ipi/ Nivo in Oct 2013 as in the UK then it was only available on Drug company sponsored trial and I had other issues.
I am lucky to have Prof Christian Ottensmeier of Southampton as my oncologist. Southampton are just commissioning a major new Immunotherapy Research centre (maybe will be in the lead in the UK) – see
https://www.southampton.ac.uk/youreit/meet-the-team/

https://www.southampton.ac.uk/youreit/#immunology

Peter

DickK
Posts: 15
Joined: Tue Aug 01, 2017 6:15 pm
Contact:

Re: Please Check In! How is everyone doing?

Post by DickK » Wed Nov 15, 2017 4:37 pm

Hi Catherine,

I’m very sorry to read of your struggles with your partner. I don’t know what else to say but hope you can find some of the strength that you have been able to pass on to so many.

I’m doing fine and enjoying life. March 2018 will mark eight years for me on vemurafenib, still taking 720 mg twice a day. I was in the phase II clinical trial and I continue in a crossover study at NYU with Dr. Pavlick. I check in with her every twelve weeks and I get scans every twenty-four weeks.

Take care of yourself,

Dick

AlanF
Posts: 46
Joined: Mon May 04, 2015 4:16 pm
Contact:

Re: Please Check In! How is everyone doing?

Post by AlanF » Wed Nov 15, 2017 6:28 pm

Hi Catherine, so sorry to hear about your partner and all the struggles you going through.

Have not posted in awhile. Things with me are going okay. As mentioned in earlier posts finished the Ipi/Nivo combo clinical trial back in June, 2016 which gave me a complete response. After that the onc had me on 12 week scan schedule of a MRI of the head and a full PET scan, nothing new showed up. Now for the 2nd year of scans, onc modified it with full pet every 12 weeks and a MRI of the head every 24 weeks. Next scheduled scans are next January. Also go to the Melanoma and Pigmented Lesion Clinic every 6 months for skin checks. Since I have a lot moles they did a pictured mole map to monitor any changes. Hoping things remain good.

Wishing everyone a Happy Thanksgiving, Alan

WITom
Posts: 15
Joined: Thu Oct 25, 2012 7:21 pm
Contact:

Re: Please Check In! How is everyone doing?

Post by WITom » Wed Nov 15, 2017 11:20 pm

Hi Catherine

I celebrated my 57th birthday this past weekend but more importantly reached 5 years NED. I was in clinical trial with 10 mg ipi with 6 infusions (2 maintenance). The ipi side effects almost killed me but an emergency iliostomy saved me and very blessed to later be a complete responder. Life is very good now. Thanks again for all the help you and your forum have provided - wish we could somehow return the favor.

Keeping you and your partner in my prayers!

Tom

Catherine Poole
Posts: 11265
Joined: Wed Jan 02, 2008 12:09 am

Re: Please Check In! How is everyone doing?

Post by Catherine Poole » Thu Nov 16, 2017 10:00 am

Wow, so good to hear from you all! Your words are dear to my heart and yes provide strength to me during a prolonged difficult time. Gives me much to be thankful for.
Catherine M. Poole, President/Founder
Melanoma International Foundation

Post Reply

Who is online

Users browsing this forum: Google [Bot] and 9 guests