Topic: Husbands chemo has been stopped

We went in for my husbands doctors appointment and his ONC stopped all chemo. She said that the folfox was to help him live a better quality of life and since its doing the opposite she didnt want to continue. She said it wouldn't help him live longer. So we are on to the last step, she has referred him to Karmanos Cancer Center in Detroit that is currently doing a Phase 1 Clinical Study to see if he is eligible.
Also we have an appointment for hospice to come in just to go over things and explain that when it comes time for him to need hospice how they do things. He's not ready for hospice yet since he's still working.
I am scared out of my mind. I know he is sick but to come to the terms and except it that he's sick with cancer is totally different.
Trying to explain to the kids is the worst. It just breaks my heart.
Sometimes I have so much anger i don't know what to do with it. All i think is hes my best friend and we were suppose to grow old together. This just isn't fair!
We had so many plans for the future and to think none of its going to happen. All i wonder is why!
Has anyone else gone through a clinical trial like this? I don't know much about it yet. We go July 25 for a consultation to see if even qualifies.
Well that's it for now,
Michele

Re: Husbands chemo has been stopped

Hi,
I think your doctor's suggestion is the appropriate one; I think your husband should stop working,file disability claims and rest more and prolong the survival by conserving energy and immunity for the fragile body.

What is the point of working if your can spend more days with your family together  during these difficult times? You both can still go for a vacation or two while it can to easy the pain for both of you as husband and wife.
I hope I make sense since I am  not a very sentimental guy at all.

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Husbands chemo has been stopped

Michele, I am so very sorry! Teddy and I were older and I really think that aids in the acceptance of things. Please, please don't waste the negative energy it will serve no purpose. I am sure you have seen my post about how Teddy called the period of 'doing nothing' our Honey moon. He even told new Hospice nurses, we are on our honeymoon. Honestly, you will never look back and regret this time if you make the most of it. When you are ready to call Hospice in remember it does not mean the end, it means comfort for the patient and the family. I so agree with Percy and don't let Percy fool you as he is one of the most considerate and kindest man I know. As for the kids maybe some books to read to them might help. They have books for everything. Perhaps after telling them, you could have each one start their own scrapbooks about their Daddy so they feel they are doing something good for him, just a suggestion. I hope you find the strength for this journey as it will get you through. Please feel free to e mail me any time. Good luck with the trial appointment!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Husbands chemo has been stopped

Dear Michele,

I just want to say hello and how sorry I am that you have both been dealt this news.  It must be incredibly hard to explain to your children.  I have recently been there with my sisters children.  I agree with Lainy - hospice can help with so much including telling children and emotionally supporting you and your husband.  Time is so precious - put all your energies into the time you all have.

Clare

In the stars now . . . .

Re: Husbands chemo has been stopped

Hello Michelle,

So sorry to hear of the latest turn of events for your husband's disease.  I agree with others that making the most of the time we have for everyone is the best course of action.  Seems you still have time to make some wonderful memories and have some laughs as hard as that may be. 

My heart goes out to you and your family.

Hugs,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

6 (edited by marions Wed, 03 Jul 2013 22:09:50)

Re: Husbands chemo has been stopped

Michelle....my heart goes out to you.  Young, with small children, and facing the possibility of loosing a husband is one of the most difficult things to face.  I believe that everyone's life is cut short by death and that it is unimaginably painful, but age does matter. As the others have mentioned, reaching out for support for you and the children, together or apart, is one of the most important things to do.  And, dear Michelle, you will be strong because you will do anyting to protect your children and help guide them through the process of acceptance. 
I  also have learned that hope and fear grip everyone who struggles with a life-challenging illness. If we take away hope, we leave are left with nothing but fear.  Hope is something we cling to as long as we’re alive, until the last moment, we can have hope.
I hope that the Clinical Trial will offer you just that - a bucket full of hope. 
Re: clinical trials: in Phase I, researchers test a new drug or treatment in a small group of people for the first time to evaluate its safety, determine a safe dosage range, and identify side effects.  But there also is "hope" that your husband may be one of the first to benefit from a new drug. Please share with us the recommendations and please continue to lean on the great members of this site.  We are in this together.
Tons of hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Husbands chemo has been stopped

Dear Michelle,

I am so very sorry to read this latest news from you. I also agree with what the other have said about hospice. My dad went through hospice care and the care and everything that they did for him was exceptional. Before my dad went into hospice care they came and explained everything that was involved and that made it easier for my dad when that time finally came. I wish that there was more that I could say that would help. I hope that you will get some good news from your meeting about the clinical trials and please let us know how that goes. Please know as well that we are here for you as well.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.