Topic: My husband is so sick

Dear all,

I've written before, but not frequently so I will tell you a bit about our case:

My husband was diagnosed at 40 with CC, sent to Mayo Clinic for treatment
Accepted into the LT program and completed all of the standard pre-transplant regimens (brachy, 5FU, etc).  At LT (41), there was a lot of cancer, deeper than they would've liked so to get a clean margin, they did a whipple. He recovered really well from both LT and whipple.

At the 8 month post LT appointment (age 42), it was shown that his CA19-9 level and the CT that the tumor had returned to the BT and in the liver, I think. The tumor is around the portal vein, etc. and was already starting to push on this and cause slight blockage of blood flow. He was doing less well at this point in time, but still functioning at about 50% or so.

Mayo said the next treatment would be chemo, if he wanted it, but that time was most likely limited (they did not want to put a time frame on his life, of course). "Less than a year" was mentioned, but so was 6 months... it wasn't clear, plus we all know these are just stats.

They did not do a PET scan, only a chest CT- which showed no tumors.  No other scans have been done to date.

We opted for chemo in our home city, 4 hours from Mayo for logistics, etc.  He is on a Gem/Cis combo (standard) where he gets a treatment once a week for two weeks and then has a rest week (1 cycle) and then starts again for cycle 2. After his 2nd Cycle 1 treatment, his H/H was so low, he ended up in the hospital needing transfusions and his WBC was also danger low. Once CBCs started up, he was released. 

Chemo was halted for an extra week of rest but then resumed. He just finished the 2nd treatment of round 2 last Friday.

His CBCs are all very low, as before, but his kidney, liver, bili are all doing very well. BP, pulse all that is fine. No temps this time. Aside from the neutropenia, you'd think he was a healthy guy...until you look at him...

We are waiting for the next doctor appointment to have the tumor marker results and maybe a scan (if results are positive)... in the mean time I am really questioning the benefit of the chemo right now (at this stage).

Since begining the chemo he has gone from overall health of 50% to about 10% (IMHO) in a rapid amount of time. He sleeps most of the time and when not sleeping, he has a blank and vacant stare that he says he cannot control- he is in an "unexplainable fog" in his words. He still eats well and BM are regular, but he does have constant diarreah (sp). He feels all that he loves to do has been taken from him. He has had problems with sight loss and given systane to help rehydrate. He drinks lots of water. TV, books, playing with our son, talking... have all stoppped.... he's like a ghost walking around the house, and it's so hot outside he cannot go out.

I am so worried about him and wonder what could be causing this other than the chemo (e.g. other tumors they haven't found).

I am mad about the chemo treatment because it's put him in a stupor and his quality of life is in the toilet.

I feel like we are just "waiting for the end" because it has to be better than this, and then I feel guilty.

Basically, everyone feels lousy- sad, depressed, hopeless, and I don't know what to do to break the cycle.

For those of you that have gotten to this stage during treatments... any advice? Any pearls of wisdom? Actually, it helped me just to share this with others.

Thanks for reading.
Jenny

Re: My husband is so sick

Hi,
the link below is a mom(Eileen) taking care of his son who had LT at Mayo,and like your husband had complications after LT;you may read her messages and or email her for both of you have to care for the same outcome after LT at Mayo. Her son is in the 20's of age.

cholangiocarcinoma.org/punbb/viewtopic.php?id=8578

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: My husband is so sick

I'm so sorry you're family is going through this. Chemo can be so hard on a person. It could be side effects or perhaps he feels so poorly that he is becoming depressed.  He really should talk about what's going on with him.  Hope you all are feeling better soon.

Re: My husband is so sick

Dearest Jenny, my Teddy had a Whipple at 73 fortunately for us it bought him 5 1/2 years. They were not the greatest but not the worst. The CC returned in June of 2010 and the ONC recommended Palliative Chemo. Teddy asked him how much time it would buy him and when the ONC said a month or two Teddy opted out for quality time not quantity. It is a very difficult decision but it was his. We used that 4 months as our "honeymoom" as he called it. The ONC was spot on with timing. I do not regret anything we did or any decisions made as I made it the most precious time in the world. The key? This disease is only for the strong! Weird but one must try to be very, very strong and as I posted yesterday, I believe sometimes we as Caretakers have to let go which is not giving up. Use the time wisely and just shower love on each other and in time that is what we will remember most.

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: My husband is so sick

Jenny,

I am so sorry to hear the difficulty that your husband is going through with the chemo treatments.  Cisplatin can be so very hard on people. 

I have not spoken with you before, but I happened to notice your post today.  I felt so worried for you all, and wanted to reach out to you. As someone who gives chemo to patients, hearing that your husband is so greatly affected makes me think that there needs to be some discussion re: current chemotherapy treatment.  Perhaps there could be a reduction in the dose of the medications, or different medications used.  You are right to be concerned, as you are his wife, you know him very well-and you know when something is not right. Go with your gut.  Have a frank discussion with the oncologist and let them know how quickly things have changed since starting the standard chemo. 
I do not know if my post will help out or not, it is not meant to worry you, only to tell you that you might be onto something with the chemo causing issues.  Also, are you near Mayo? I just happen to be in Minnesota right now and if there is anything I can do for you, let me know!
-Karen

6 (edited by jimmy82 Sat, 11 Aug 2012 01:30:06)

Re: My husband is so sick

dmj4ctj wrote:

I'm so sorry you're family is going through this. Chemo can be so hard on a person. It could be side effects or perhaps he feels so poorly that he is becoming depressed.  He really should talk about what's going on with him.  Hope you all are feeling better soon.

I think i totally agree that Chemo could be so hard on person and yes it could leave a bad impact on ones health..
Basically Chemotherapy is the treatment of cancer with an antineoplastic drug or with a combination of such drugs into a standardized treatment regimen. Certain chemotherapy agents also have a role in the treatment of other conditions, including ankylosing spondylitis, multiple sclerosis, Crohn's disease, psoriasis, psoriatic arthritis, rheumatoid arthritis, and scleroderma. The most common chemotherapy agents act by killing cells that divide rapidly, one of the main properties of most cancer cells. This means that chemotherapy also harms cells that divide rapidly under normal circumstances...
And i do hope that you all feel better soon...
aged care homes