Time and Symptoms
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Dear Bazel,
I feel for you in this stressful time, and I think Jeff and Fran both gave very good advice and information. I know I was always looking for answers when my mother’s health took a turn for the worse or the better, and I still don’t know if the chemo weakened and killed her a little early, or if the disease was just progressing on its natural, devastating course.As I always say, this disease is so different in each individual, so there is really no answer. The chemo can be quite debilitating for some people, so he may be feeling the side effects of that, and I think those can last longer than they lead you to believe (Xeloda didn’t bother my mother as much as the Gemzar – and I think mouth ulcers are definitely a chemo side effect). On the other hand, there is the possibility that the disease is progressing. Don’t beat yourself up thinking that you wasted your time with chemo and made him suffer – it’s a decision that’s purely individiual and you never know if it may work or not, and I’m sure you are doing the very best for him and he thanks you for it. I often feel guilty that I allowed my mother to endure the pain of two rounds of chemo, but we had to take a shot and we couldn’t know that she was too far along and too sensitive to the treatment. If you feel your dad’s quality of life is being compromised by the chemo, I would see if he was amenable to taking a break or discontinuing completely – he may be relieved at the suggestion – or he may want to continue, and it is his right to choose either option.
As Fran said, the carers are burdened with the big questions and worries, and we all do the best we can in a sea of uncertainty. And as Fran also said, sometimes people bounce back SEVERAL times when you think all hope is lost. Hopefully the oncologist can give you a better picture of what’s going on, but I just wanted to give my two cents of support and say that you’re doing a great job and there are just some things you have no control over, much as you try. Jeff’s suggestion about hydration is VERY important, too. I wish you and your dad the best of luck.
Fran – so sorry to hear your husband is doing poorly, I know how gut-wrenching it is. I’ll just hope that’s he’s having another slump that he can bounce back from — but it’s hard to live this roller coaster, hard for the patient AND the caregiver.
Much love sent to all of you,
JoyceThank you Jeff. Your personal sharing is invaluable. One of our challenges in this equation is that my mom is in the mild/moderate stages of Alzehimers and while in many ways she is very functional, in others she is not at all. Little things like assuring dad keeps fluids is a challenge. I will be speaking to his oncologist office tomorrow as he has developed mouth ulcers and can barely speak. I have read there is a Rx mouth rinse that will help.
Dad will get results from labs (liver function, white cell and CA19-9) on Wednesday and this will be telling. His last CA19-9 went from 1400 in late August to 1790 in early October. I don’t know how broad this scale is so I don’t understand the relevance of the change. I just know that the change and other symptoms caused my dad’s Dr. to be concerned that cells were taking hold in my dad’s abdoment. While I hope this misery has helped and we will see an improvement, we see the stuggle in him.
Thanks again.
Fran,
I thank you as well for sharing. In many ways this is very hard to talk about and in others I really need to. For that reason, I feel blessed that I found my way to this board.Bz
Dear Bazel…. I can only atest to my treatment with Gemzar and Xeloda. It caused fatigue, foggy brain, numbess and tingling in my fingers, extremely sensitive to anything cold. I felt like sleeping all the time as well and had the chills off and on. The effects did subside but it took a good 2-3 weeks after completing 9 rounds of it. The Oncologist basically would need to do a CT Scan to see if tumor size has shrunk also usually a blood test CA19-9 which is used as a tumor marker. You should also be getting weekly labs to keep track of your platlets and white blood cell count and your nuthrophils. I assume initially Ct and CA-19-9 were done as a baseline. I did have my Xeloda cut in half due to side effects being a little to much for me. I started to having to much numbness in my tongue and throat and called a time out. All that you mentioned were side effects I experienced. But I did cut dosage after 4th round of treatments. The Cancer symtoms can also cause fatigue, pain, juandice if bile is getting blocked. Also itching and shoulder pain. Some times the chemo causes the pain as it is eating away at blood cells some good and some cancerous. Yes there will always be some collateral damage with any chemo. One last thing is I had to keep going back to get IV fluids as” dehydration” hits you before ya know it and it causes many symtoms as well. Ya got to stay hydrated I learned after a few ER visits and I couldn’t drink enough to keep up. Once I got rehydrated I felt like a new person. Bazel, tell your Dad staying hydrated and eating small meals and keeping the bowels moving are the three primary things I have learned during the last 3-4 years of different chemo regimens. I wish you and your Dad the best and a prayer of support is coming your way. Jeff G.
Hi Bz, sorry to hear that your dad is not doing so well. Sometimes I think it is so much harder on us the carers as we want so badly to do what is best for our loved ones and all we can do is support them best we can.
My dear husband is having no treatment as there is none offered in Australia, maybe if we had private insurance they would be trying different chemo’s on him but I have been told by so many doctors that they have not proved to be of any benefit on quality and quantity of life. I have read so many stories on this board where some people have extended their life but others have gone down hill so quickly after commencing treatment.
It is so much up to the individual that has this desease to make the choice and up to us their loved ones to support what ever they decide.
I had a very bad weekend with my husband, he is losing weight very quickly and now is only about 58Kg he was 76kg when he was diagnosed in March 07. He will not give in to this illness and still tries to carry on as normal. Saturday he was up for about 2hours doing his chores around the yard when the pain hit. He was in bed all weekend curled up in a ball, he hasn’t been able to eat much apart from a bit of porridge when he gets up. I put a morphine patch on which took about 12 hours to kick in. Thankfully he is not in pain now but very tired and quite weak. Last week he took a morphine capsule 20mg and it shut down his bladder and bowel for 36 hours, thankfully the 12.5 mg patch hasn’t done that. I am now trying to find out what food supplements are availiable as a drink as eating solids is out of the question, the pain suffered after is too bad.
I have almost felt shellshocked this week at the speed this nasty cancer has hit my husband in the last 2 weeks. I am sure he feels the same, he goes to do something that he had no trouble with a couple of weeks ago and now he hasn’t got the strength, it breaks my heart to watch him fade away before my eyes.
I really hope that your dad improves, as I have found that my husband has bounced back so many times whilst battling CC, sorry for going on but I just feel that you are going through similar emotions to what I am experiencing and it helps to have this forum to share our feelings and experiences.
Forgive the spelling errors, Fran Australia
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