Needing some Inspiration, please!

[edonaldson]

My husband was recently diagnosed with high grade, aggressive bladder cancer that has metastasized to his lungs (lymph nodes were clear as per the CAT scan). His doctor said it is treatable, not curable. He starts chemotherapy (Cisplatin & Gemcitabine) tomorrow for 4 rounds. Followed by radiation and possibly more chemo. His doctor is trying to get him into a clinical trial for immunotherapy (Tecentriq) but there is a “paperwork” problem, so he will start chemo only tomorrow. If /when he has immunotherapy, we were told he would be taking it forever.

Thanks to Covid-19, he has had to go through the last TRBT, received this crappy diagnosis  and now will be getting chemotherapy alone.

Is there anyone going through this treatment? Any advice would be greatly appreciated.

Thanks,

Elaine

[Joe]

It is a crappy diagnosis for sure.   I cannot imagine how you and your husband are dealing the matter in this already challenging environment.   I had been diagnosed with early stage and I have been treated accordingly so I do not have experience of dealing with your husband’s prognosis.   But, I just want to say that you and your husband are not alone.   5% or about 500 people of about 10,000 Canadians every year diagnosed with metastasized condition when they are first diagnosed.   Chemotherapy and radiation are the standard first line treatment.   Hopefully, that will kill most of cancer cells.  Even for those who do not respond well to chemotherapy, in the last few years,  there have been several drugs and treatments developed such as immunotherapy like Tecentriq you mentioned.   I know someone whose chemotherapy did not work and have been treated with Tecentriq and so far doing well.   I also know someone who did not respond well to immunotherapy and now have been treated with a target medicine called Balversa and the person’s cancer shrunk substantially.    If you do not see the response here.    Below is the link you may want to check.

https://www.inspire.com/groups/bladder-cancer-advocacy-network/discussion/just-diagnosed-with-metastatic-bladder-cancer-any-advice-welcome/

Best wishes

 

[marysue]

Hi Elaine:

 

I’m so sorry to learn of your husband’s diagnosis and that the COVID 19 crisis is making it more difficult.  We do live  in strange times.  I agree with Joe in that it certainly is a crappy diagnosis at the best of times. I have not had to do chemo or radiation but do understand the struggle of facing things alone.

The only thing I think that you can do right now since you can’t accompany him in the clinic is just be there for him when he is done the treatment and plan something special for post treatment i.e. extra comfort measures, food treat if he can eat it.  He will feel better with the extra comfort measures from you and you will feel better doing that something for him. If you aren’t sure what he would like, I’d say ask him.  His requests may change as time goes along.

Like Joe, I was fortunate to be diagnosed early but I did need a lot of support.  My diagnosis came on top of a lot of other heavy things happening in our lives at that time so that combined with the mental stress of a cancer diagnosis nearly sent me over the top.  My hubby did a lot of extra things like picking up on tasks that I couldn’t do at that time and he would get me some Vietnamese beef noodle soup after each BCG immunotherapy treatment. Just the little things meant a lot.

I know this isn’t much but I hope it helps.  I wish you and your hubby the best going forward.  ((((HUGS))))

[edonaldson]

Joe, thank you for the link! It is great to read of others triumphs over this disease.

[edonaldson]

Thank you Marysue, the info and hugs are very appreciated.

[Author]

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