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jmathias's Message Board Messages

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RE: Opdivo

by JMathias - November 13, 2018

Sadly, my husband lost his battle this time last year.  I hate this cancer and hate that the VA has denied EVERY claim

RE: Opdivo

by JMathias - May 12, 2017

Thank you for sharing your story too, Ranger... the more I hear, the more hope there is!  I'm so happy it worked for you!  It's crazy that it doesn't work for everyone... so odd but then again I guess it's based on your system - PD-1 and CTLA-4 inhibitors.  In a way I wish they would check my husbands markers to see if it will work for him - is it worth it to go through all this if he doesn't have the markers?! 

I will definetely talk with the oncoligist about the the copay assistance!  Thanks for the info!!! 

RE: Opdivo

by JMathias - May 12, 2017

Margo,

Thank you so much for sharing!  Your story gives me hope that this just may work.  I had also forgotten President Carter's fight until Susan reminded me that he too was given  immunotherapy and it worked!!!  I know Opdivo is so new for head and neck cancer that it makes me a bit nervous but where there is treatment there is hope, I must remember that!!!  ♥

RE: Opdivo

by JMathias - May 11, 2017

Thank you Tig!  We are so grateful and covet every prayer ♥

RE: Opdivo

by JMathias - May 11, 2017

Susan,

Yes, how I pray it works!  I'm not sure why but he isn't a candidate for Keytruda??  If Opdivo doesn't work then talking about a stronger chemo drug!!!  Not sure what could be any stronger than the platnium drug he was on that did absolutely nothing!!! 

Right now we are waiting for our insurance to approve the Opdivo.  His oncoligist wanted to to begin next week but so far not a word from insurance.  Part of this fight is waiting though and we have learned to have patience and grace.

Blessings,

Jill

So HAPPY for you both!!! Thanks for sharing your story and giving us all hope! 

Ha, take that cancer!!! 

Congratulations!!! ♥ ♥ ♥

RE: Opdivo

by JMathias - May 09, 2017

Thank you Chuck!!!  I really hope this works for my husband!  It's a fairly new treatment for distant mets for head nad neck cancer...  can't help but be skeptical.  He has tried everything!!! 

God bless you and your wife as well!  Even when man fails - we have not lost for we have hope!!!

Opdivo

by JMathias - May 09, 2017

Haven't checked in for quite some time.  as you all have, we have been on one heck of a whirlwind ride with this DAMN cancer!!!  The 20th April marked year 3 of SCCHN and STILL fighting hard!  We are beyond grateful that my husband is still us; but we are beginning to lose hope that this battle will be won?  Long story short – after a distant mets to the right lung a resection of both the upper and lower lobe was done in July of last year. In Dec. the PET/CT showed new cluster of nodules and infiltrate to the superior left lower lobe! He was then sent to a lung specialist who ordered a CT in Jan. 2017; this showed anew right basilar pulmonary noduleand prominent mediastinal lymph nodes. This doctor wanted to “let’s watch and wait” and do another CT in 4 months. April 2oth – Not only have these nodules grown in size in 4 months but NOW there are masses; his right lung is full of cancer and has infiltrated his “7thright rib”! Also noted is a lesion on his iliac bone!  All that to say, he is heading into immunotherapy next week – is anyone here on Opdivo and are you having success?!

RE: Waiting to Exhale

by JMathias - March 03, 2016

On Jan 09, 2016 1:56 PM ann123 wrote:

I know how hard it is to stay positive, when the news you get stinks.  I thought at my 3 month follow up I was in remission.  Only to find ou that it had metastized to my lungs and both hips.  I also have 2 ugly growths on my face and neck.  I have been on Erbitux, but will be adding  Taxotere if, pet scan in Jan.  doesn't show improvement.  I also use a GTube for majority of my nutrition.  Please keep those positive things in your life in view.  When I feel down, I talk with my 2 married daughters and look at my new grandson's pictures.  I believe "it ain't over, until God says it is over".  As long as doctors give you options keep on fighting!!!

Hi Ann!

Checking in... How did the PET scan in January go?  Haven't seen you on here since January - Praying all is well

RE: PEG vs Mic-key button

by JMathias - March 03, 2016

Same with my husband; LOVED to eat and cook!!!  He LOVED to try out new dishes every time we went out and would get on me for ALWAYS eating the same thing ;) – I miss those days. He won’t go to a restaurant at all, refuses! We respect that and don’t nag at him. Our most favorite thing to do was to go to Jamaica once a year – he won’t even talk about it anymore. I’ve tried to encourage him that we still could do the other activities we enjoyed but all he says is, “And how are we going to take my food? We’d have to drag cases with us!” His supplier, Coram has a travel program, Great Escapes – I’m sure they would work with us. I haven’t researched it yet though, no need until he is ready. 

Our youngest son is 30 today –he and his family will be coming down on this weekend. My hubby insists on grilling him ribs! He won’t go out but he will still cook for his family especially on special days – he’s almost insistent.

I am happy to hear that your hubby still has his voice. Mine does too, thankfully! As you said, it was never guaranteed. He does has a slight slur not from the radiation though, this happened from the neck dissection – he also had to have 2/3 of his tongue removed.  What type of work does your husband do? Mine too uses his voice quite a bit. He is a contractor for the Air Force – many telecoms and meetings.

It has been great chatting with you today. How long have you and your husband been battling this terrible monster? We are not aloneJ 

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About jmathias

Caregiver
Head and Neck Cancer, Squamous Cell Carcinoma
Alternative Treatments, Cancer Nutrition, Cancer Treatments, Clinical Trials and Research, Genetics, Side Effects

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