update

LINDA GALE · Regular Joined: 11 Oct 2007 Posts: 13

Just wanted to give everyone an update on my husband J D. As I told you before they had stopped the Gemzar because it wasn't working. His tumor marker jumped from 462 to 1636 in 30 days. Yesterday was his first treatment on the oxyplatin. This drug is a bad boy. Two days now he has been so weak he can barely put one foot in front of the other. He can't have anything cold. He has to bundle up to go outside. If not his throat will close up and he can't swallow. We just put our trust in Jesus and pray this will work. All of you are in my prayers. I'll keep you updated on J D.

Linda Gale

brainman · Posted: Tue Oct 30, 2007 5:59 pm Post subject: Re: update

Hi Linda, I am very sorry for the deterioration of your husband's condition and the failure of chemotherapy. Oxyplatin is indeed dreadful. Keep working with his medical team to find help for JD. You and JD remain in my thoughts and prayers.
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reenie · Posted: Wed Oct 31, 2007 11:15 pm Post subject: Re: update

Hi Linda,
I went back over some of my posts from Sam's Oxylaplatin/Xeloda days-nasty stuff. Even now, one full year since my husband's passing, I am not sure about the decisions we made. It really comes down to how well JD can tolerate the drugs. I now wonder about quality but at the moment we were so focused on quantity. That's not it exactly, I think it was more a feeling that if we didn't try we would later regret that decision. The truth of the matter is we saw no evidence of these drugs helping Sam, but how do we know they didn't? We all knoweach case is different and each case has some heart braking sililarities. I am hoping for a better result for your husband.
We had a rough visit to the ER while the threat of neuropothy from this drug was very real and the ER staff was clueless... "No thank you, he would NOT like ice water!"
Is JD taking Xeloda with it?
So, do you have some help? Are there neighbors, friends, co-workers taking care of you? Feel free to PM me if you need details or just want to ramble. Take Care, Reenie

LINDA GALE · Regular Joined: 11 Oct 2007 Posts: 13

Hi Reenie,

Thank you so much for your reply. No one knows much about it or either just don't reply. I do thank you so much. Did your husband sleep a lot with his drug? Yes he is also on the Xeloda. His appetite is almost 0 since he started this on the 29th of October. His hands and feet tingle like they are asleep. He hasn't tried anything cold yet because of what the nurses told him. We have a 13 year old who is in denial. I am taking him for counseling but very little results as of yet. I do have a son, stepson and stepdaughter who live close by but J D does not want me out of his sight. He gets very anxious when he can't see me. So I basicaly take care of him myself. Hospice has come by and talk to us but as of now he doesn't want their help. He is on morphine patches and oxycodone. I think we're gonna have to go to something stronger. I know it's hard on you still but I pray as time goes on it will get easier. Any thing else you can tell me about these drugs will be most appreciated. How long did he take the oxyplatin? Thank you so much for any information.You're in my prayers.

Linda Gale

reenie · Posted: Thu Nov 01, 2007 1:00 pm Post subject: Re: update

Hi Linda
First, I will Private message you with my email address, there are some side effects I am more comfortable discussing in that way. It's just a dignity issue- I still need to protect Sam on that level. Silly, I suppose.

There is a drug called MEGACE which helped with Sam's appetite.

Sam had had 7 weeks of Gemcitabine then a three week break during which we found out he had mets to the lung, the mets to the liver had grown, and the tumors in the messentary had matted together. The next week we tried Oxylaplatin and Xeloda. Our oncologist was torn, he said he wanted to keep fighting for us but also knew there was really nothing much left to try. Sam had no energy, and had horrific side effects both of the GI variety and truly violent hiccups.
Xeloda was just too toxic for him. We tried Xeloda again, at a lower dose, to no avail. I think he only had one Oxylaplatin infusion I see it was scheduled again but as I recall, it needed to be both oxylaplatin and Xeloda and his body just couldn't tolerate it.
At that time we were getting just labs and fluids for a while as he was in such rough shape. Sam had no energy at all during that time. I was able to get home health nurses in and they taught me how to run fluids through Sam's port. That was key for us as when we went with hospice they allowed us to keep the fluids going as a comfort measure. They won't accept someone who is still getting curative treatment but they were okay with comfort. They were also comfortable with the level of care I was giving Sam so that when he wanted only me to do things, they were okay with that. I see you are experiencing some of that too. Also at this time our surgeon noticed Sam's potassium being way low and called in an order for that so even though the fluids and potassium couldn't cure him they made the world of difference in how Sam felt. The also gave me a sense that at least, I was doing something.
Hospice was kind of funny about the fluids. Some feel you are prolonging death but I can only say in our case the fluids were a God send- we had Sam with us and comfortable until the end.
On the issue of pain, we used a pain management doctor. We tried the Celiac plexus block (sadly, it didn' work)and he wore a patch and had morphine for break through pain. Once we had hospice we had morphine on a pump so Sam had control over his meds. That was a good thing. they never let us run out of anything- I still have battereies from when they would deliver them every couple of days so we never ran out in the middle of the night. I know it feels like giving up when you go with Hospice but I began to see it as taking a more active role in the things that were happening. The idea that if Sam felt a twinge of extra pain he could just push a button and it would go away was a great relief to both of us.
I wish I had more encouraging news about the drugs you are trying. Maybe JD's case isn't as far along. I am glad you have family in the area. I know these days are hard for you and I so wish I had a way to make them easier.
We tried counseling as a family (with Sam on the speaker phone while we were in the office) but it didn't seem to help either. Our son was 13 when Sam died and our daughter was 15. Sam's 31 year old daughter was here with us through much of the time and for that I am so very grateful. there is a camp for kids who have experienced first degree loss, called camp comfort zone and one called Camp Erin. I haven't been able to talk my two into going but it may be worth knowing about for later.
I am here if you need to talk. Take care, Reenie

In · Posted: Thu Nov 01, 2007 6:56 pm Post subject: Re: update

Hi Linda- I'm one of those clueless people who don't reply.

I just want you to know I'm sorry for you and your hausband. I wanted you to know that even though i have no idea. I am thinking of you both and following your story.

Taske Care.
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