Opdivo

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Opdivo

by JMathias on Tue May 09, 2017 06:16 PM

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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: Opdivo

by Chucksan on Tue May 09, 2017 07:01 PM

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You might have already seen my thread.  If not please read about my wife and Opdivo.

Stage 4 Lung Cancer In Remisssion! --- OPDIVO

(Sorry for the large fonts, here is the link below.)

https://www.cancercompass.com/message-board/message/all,9360

All the best to you and God Bless your husband,

Chuck   (Vietnam Vet)

RE: Opdivo

by JMathias on Tue May 09, 2017 07:07 PM

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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!!!

RE: Opdivo

by Sdurnell on Thu May 11, 2017 06:35 PM

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J,

Opdivo is one of a new class of medications--immunotherapy--that can have dramatic positive effects for some people.  You may have read about former President Jimmy Carter's melanoma that had metastasized to his brain while he was in his 90's.  He took another immunotherapy drug and it completely wiped out his tumors to the point that he no longer takes the drug.  Now it and Opdivo have been approved for metastatic head and neck cancer, and some folks are seeing similar results.

Here's hoping he will be one of the people that this drug helps.  And if not, it might be possible that he can try the other that Carter took, Keytruda.

All the best,

Susan

RE: Opdivo

by JMathias on Thu May 11, 2017 07:16 PM

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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

RE: Opdivo

by TIG2016 on Thu May 11, 2017 09:51 PM

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J I'm following your thread. I am praying for y'all that this works! Tig

RE: Opdivo

by JMathias on Thu May 11, 2017 10:17 PM

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

RE: Opdivo

by Margo48 on Fri May 12, 2017 12:14 AM

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Dear JMathias, I have written a few times here about Opdivo or Nivolumab. Best thing for your husband to go on. I was diagnosed with RCC stage IV in July 2011. Have had many different treatments, radiation, including cyberknife, etc etc. I have metastasis in ilium, sacroiliac joint, ribs, shoulder blades, vertebrae bones, liver, hip bones, lungs, skul, neck and am on Nivolumab since September 2015, with fortnightly treatments. During this time all my honey metastasis remained stable, a year ago we saw 2 new nodules in my lungs only and these were successfully treated with Cyberknife radiation. Otherwise I have remind stable, various tumours have shrunk, some smaller ones have disappeared. So, never give up. Your husband just has another hurdle to jump, but he can get over it. No cancer is the same, but never loose hope. My life is more or less normal, I have no noticeable side effects from Nivolumab, whilst earlier other chemo treatments almost killed me. Take each day as it comes and try to stay positive. Good luck! Cheerio, Margp

RE: Opdivo

by JMathias on Fri May 12, 2017 02:52 PM

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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 Ranger479 on Fri May 12, 2017 03:39 PM

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I have been on Opdivo for 18 months and just went into remission a few weeks ago.  I have stage IV nsclc since 2009.  About 6 months ago my tumor was softball sized in right upper.  Now it's gone.  It can work, I just wish it would work for everyone.

Also, make sure your oncologist signs you up for copay assistance from Bristol Myers Squibb.  If approved, they will pay your deductible!  My insurance pays 90 percent but 10 percent of a huge bill is still huge.

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