Good news and great news

Posted By
mjanssentx
2/12/2018 1:37pm
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Replies: 7

Fellow warriors...this is the note that I sent to my team...we have come a very long way in 3.5 years. I know we have lost many among along the way...but hope is a good thing.  (and for those that remember my name...I think I was among the very last folks to do the full 1 year treatment of Interferon...and survived)

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Team – it has been almost 3.5 years since my diagnosis of Melanoma Stage 3A.  The bad news is that Stage 3A patients have a 30-35% chance of becoming a Stage 4 patient.  (and there is no Stage 5)

At the time of my diagnosis, if you went to Stage 4, you were essential dead man walking with a life expectancy of 5-8 months.  So I dreaded the PET scans that occurred every 3 months (and now every 6 months).  Three years ago this time, I was walking into the doctor visit knowing there was a 1 in 3 chance that I was NOT going to make it to July 4th….(and those 5-8 months would have been filled with desperate surgeries and radiation treatments…so your quality of life was immediately reduced.)

So 3 years later when I walked into the office today, I know I am down to about 1 in 8 chances of going to Stage 4.  (odds get better over time)  I have continued to get good news and today was no exception.

But the really great news applies to your friends and family as well.  You probably have heard about these new miracle Immunotherapy drugs that have hit the market in the past 2-3 years.  They are game changers in the cancer game for sure.  And the Melanoma patients are leading the way in the testing and seeing results. Stage 4 is no longer a 100% death sentence.  In fact, in speaking with doctor today….he is suggesting that about 60% of Stage 4 patients are alive 3-4 years out (they don’t really know all the stats given the newness of the drugs). 

Why is that great news for all of us….the Immunotherapy drugs first tested with Melanoma patients are being applied to many other cancer treatments.  I don’t want to sound to overly optimistic….these drug treatments can have some very nasty side effects and they don’t work for everybody.  These doctors are still learning but that is a heck of a change in the outlook of this here-to-fore deadly disease in just 3 years.  (and I am sure many of us have lost loved ones to cancer)

From certain death…to hope.

A good way to start the week.  Feeling good and you should to…  Michel

Newmanbell - (2/12/2018 - 2:15pm)

I love this post, especially with my husband on his way to Dana Farber to meet with Dr. Hodi as a Stage 3b patient.  It is often easy to get yourself very down over this disease, posts like this truly help all of us have hope.

Thank you.

Donna

Anonymous - (2/13/2018 - 8:14pm)

How did you like Dana Farber?

Newmanbell - (2/14/2018 - 9:08am)

OK, short visit.  There are 3 lymph nodes in my husband's chest that are a bit brighter this petscan.  They are small.  Dr. Hodi said it is hard to say what they are.  Could be Melanoma, or could be reaction to his recent (past 2 months) of Opdivo every 2 weeks.  We will go back in May.  Other than that things are clear and he seems to be able to do Opdivo with minor issues (some fatigue but a bit of prednisone seems to help that every other day).

ed williams - (2/18/2018 - 8:30am)

Hi Newmanbell, I have watched Dr. Hodi only on video but he comes across very impressive and is one of the big names in Melanoma research field. I have a question for you about giving prednisone for the fatigue, that is the first time I have heard of it use to conteract fatigue, what dose did he put your husband on if you don't mind me asking and were there any other side effects other than fatigue going on? Best Wishes!!!! Ed

Gene_S - (2/13/2018 - 10:13am)

Were you seen by a melanoma specialist.  My husbands diagnosis started at 3b with a 10.5 mm lesion and he refused interferon.  This was in 2008.  He did progress to stage 4 in 2010 and in March of 2011 started a clinical trial for Ipi 10 mg/kg and GMCSF.  In July 2012 he became NED and he has stayed that way for over 5.5 years.

I don't know who gave you such a grim sight on melanoma but now there are more and more drugs being used for melanoma treatments and many are living  longer after diagnosis.  

You can read more about him in his profile.

Judy the loving wife of Gene (NED for over 5.5 years)

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Love this post! I completely agree, even if we are simply "holding ground", the folks in the trenches are developing new, novel, and improved treatments for this bastard of a disease and we are helping to blaze the trial to our own cures and perhaps cures for the masses. Warrior On!!

Tex

Christinad - (2/18/2018 - 1:03am)

I was diagnosed with stage 3a December of 2014. At the time my only option was interferon or watch and wait. I chose interferon as well (it was awful). I agree with your post 100% and couldn't have said it any better  :)