IPI Week 108

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3/1/2011 8:51pm
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Replies: 18

Hello All,

I've been laying low for awhile, but thought it might be a time for an update.

I've just reached my 108th week of participation in the IPI "Brain" trial.  It's a bit overwhelming with all the knowledge I've gained about Melanoma since my "move up" to Stage IV in January of '09 to still be an active participant.

The MRI was consistent with the last done 3 months ago.  3 small "enhancing" lesions (too small to measure) in the brain. The docs are about ready to call them necrosis.  The remains of the radiated tumor in my C-spine is slowly shrinking away as my body disposes of the dead tissue.

The mets on the left adrenal and the small bowel disappeared along with the majority of lung mets over a year ago.

One pesky met in the left lower lobe obstructed a bronchial tube and caused the formation of a couple of small semi permanent pneumonias.  In the last month two bronchoscopes were done on the lobe.  The first, a flexible clearly showed the lesion in a very accessible location.  A week later a rigid tube scope was performed to attempt to remove the entire met.  Unfortunately there were some unforeseen difficulties and only about 2/3rds of the met could be harvested.  In addition the bronchial tube and lower lobe were "compromised" so the decision was made to remover the lower left lobe with a VATS procedure to be done in two weeks..

The bottom line is once the lung procedure is complete I should have no active disease.  HOLY S*iT BATMAN!!!!

The other good news is that I will remain in the IPI trial and continue on maintenance.

 

Jerry from Cape Cod

It's about kickin' Melanoma's butt! "Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

lhaley - (3/1/2011 - 10:31pm)

While reading your fantastic news tears of joy are rolling down my cheeks. 108 weeks and complete success is within your grasp!! 

I'm sorry that the last few weeks have been so trying and you still have one more difficult procedure to go but WOW!

With all of the bad news posts of late yours is sure a great mood elevator!

Linda

NicOz - (3/1/2011 - 10:49pm)

Holy $hit Batman is right! :)

*sigh* Guess I'll be forced to raise a glass to you from across the pond tonight (2 hours 'til beer o'clock!) Way to kick butt, Jer!!

Nic

xxx

Meh. Get on with it.

Do not feed rabid monkeys.

To fear is one thing. To let fear grab you by the tail and swing you around is another

Jerry from Cape Cod - (3/2/2011 - 8:34am)

like anyone is successful in "forcing" you to do anything.  *G*

Hugs,

Jerry from Cape Cod

 

It's about kickin' Melanoma's butt!

"Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

jag - (3/1/2011 - 11:39pm)

Nice work IPI, Jerry's Body, and Jerry's Brain! Way to go!

Insert Generic Inspirational Motto Here

Rocco - (3/2/2011 - 5:46am)

Way to go super hero! 

Congrats on the continued response from ipi.   Best wishes for an uneventful VATs procedure and speedy recovery!

-Rocco, Stage IV, ipi responder (so far!)

Luke 1:37

Vermont_Donna - (3/2/2011 - 6:37am)

Glad to hear this news Jerry! How long is the ipi trial that you are in?? Hope the VATS goes smoothly!

Vermont_Donna, stage 3a, stable after 4infusions of Ipi

Jerry from Cape Cod - (3/2/2011 - 8:32am)

Hi Donna,

Same question I asked yesterday.  The answer is "unknown" however, it's suspected the BMS might want to keep responders in the program so they can have better control of the dosage, schedule, scans and followups with a group even if / after FDA approval. 

So we are just going with the flow.

Jerry from Cape Cod

It's about kickin' Melanoma's butt!

"Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

Sharyn - (3/2/2011 - 7:16am)

Fabulous news, Jerry! I want to be like you!!! I haven't heard anything back from Montreal about my ipi trial, despite several attempts to contact them. It seems BMS is stuck on whether I can have my week 24 CT scan here in Nfld, and not have to go to Montreal. I really don't understand why they're being so GD picky for a compassionate use trial! Anyway, hopefully I'll hear something soon. As for you, congratulations!! I hope one day I'll be able to brag about my own week 108, and you'll be congratulating me. Keep up the super duper response!

Hugs

Sharyn

WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial
Mets to brain, lung and sub-qs. Craniotomy.

jim Breitfeller - (3/2/2011 - 7:56am)

Jerry,

Contrats!!!!! you deserve it.

 

Once Yervoy is FDA approved, you will see it as a the "NEW Gold Standard of Care" for Cancer. In combination with other immunotherapies, you will start hearing the word CURED!!!!

Warm Regards,

 

Jimmy B

ValinMtl - (3/2/2011 - 8:54am)

 JERRY...after the lung procedure...that means you're NED..yeaahhhhh.  That's what all us stage IV aspire to be...I want to be just like YOU!!  Like Sharyn, I'm waiting to see if I'm still eligible to continue..I pray so.  Val

Live Laugh Love
Nothing is worth more than this day!

ChristineL - (3/2/2011 - 10:58am)

Jerry,

So great to hear from you, and that you are kickin' butt!  What a relief.  As always, I'm thinking of you.

Best,

ChristineL

Fight like hell

triciad - (3/2/2011 - 7:09pm)

Jerry,

I love these types of stories...congratulations!  I am so happy to hear about your success; you are so helpful to everyone on this board; you definitely deserve this!  You are in my prayers for a successful VATS.

Keep the good news rolling!

Tricia

King - (3/2/2011 - 8:21pm)

Jerry,

 

Thanks for the update!  You are amazing...week 108..wow!  Wishing you a quick recovery from the VAT.  You are an inspiration to all.

 

Stay Strong
King

Stage IV 7/05 Liver mets

swissie - (3/3/2011 - 7:25am)

Wow Jerry, this is really great news.

I wonder if you are the longest responder here. How many timres did you get the medication now?

I had to end my trial (10mg/kg) after 8 rounds (in week 72). My fatigue was getting to much in the way of a normal life.
After reviewing the latest scan results I also found out that I had an enlarged spleen, so I am happy I ended the trial.

All the best for you!

Jerry from Cape Cod - (3/3/2011 - 8:46am)

Hi Swissie,

I know of a few longer term responders.  HIPPA restricts a lot of interchange.  At least one peaks in here every once in awhile. 

I'm sorry to hear that your side effects were so severe.  Are you still stable/responding?

Jerry from Cape Cod

It's about kickin' Melanoma's butt!

"Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

swissie - (3/3/2011 - 9:03am)

I was tumor-free before I started. "Only" stage IIIB. I guess I will never know if it worked or not (if I ever would have gotten tumors without the ipi).

But I hope to have enough ipi in my body to keep me clean forever!

All the best,
Sabine

Jerry from Cape Cod - (3/3/2011 - 10:16am)

Sabine,

I'm happy to hear that you are doing well.  The researchers don't really know how long the blocker will work BUT if you tolerated all those rounds it's probably still in your future "arsenal" if anything should happen.  I also believe that we are at the very beginning of a lot of new science that will benefit all of us with Melanoma.

Best,

Jerry from Cape Cod

It's about kickin' Melanoma's butt!

"Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

Jim M. - (3/3/2011 - 9:11pm)

That's awesome Jerry! Sounds like you turned your body into an Ipi arsenal!!

 God Bless,

 Jim M.

 Stage 3C

 4 rounds of Ipi