When To Contunue Chemo --Rauna If You Are There

Hi again guys,
My dad had his last MRI on 2/22. no new growth. YEAH He is weaker weaker over the past weeks. His hemoglobin and platelets are low (100K platlet count) When I asked about next Temodar our onc told me today only gave us the last treatment b/c WE wanted to. He said his performance stance would not normally be indicative of treatment. He says if his platlet count get close to 110K he would begin treatment again only if we would sign off on it.

My dad says he is not ready to give up. We had a real scare last week after I had been there for a long weekend my mom called me back in town the next day becasue his breathing had become extremely labored and w/congestion and been barely eating for days (Hosp staff had asked us many times if we will do a DNR order) Now he has made a comeback after visits from fam and friends. He is back to eating full meals and seems to have more energy. For those of you who have been through this already how have you come to decide when to stop the chemo. My dad wants to live! We have been letting him make all decisions up to now and would like to continue as long as we think he is able. I can see how there might be complications from the chemo but also resurgence of growth if he goes off. (his last treatment was 2/1)any feedback on how you've handled this would be great. Thank you so much.

Stay strong!and be well! christine

Ps Rauna --I've been thinking of you. I hope you are doing well.

Christine -

That's a hard one. My mom was on Temodar from Feb until Nov. She seemed to be doing well on it as far as side affects went...in Nov is when they found the inoperable tumor. So really Temodar only worked for a while for her...then they put her on Camptosar (CPT-11), she had one treatment of that and I noticed immediately she had trouble with balance, she was more dizzy, and had diarrhea, the day after the second treatment she was in the hospital with an infection because her blood counts were low. she had a UTI that she didn't know about which went septic and almost killed her.

My basic theory is this...I know and understand that your father wants to live, my mom did too and she fought hard with all of her might...I always focused on my mom's QUALITY of life, not the QUANTITY. I wish she was here with me today...I miss her more than anything in the world...but I didn't want her to hurt and I didn't want her to even try to the CPT-11 but it was her decision, she was afraid of doing it but was also afraid of not trying it in case it did work. The day of her second and last treatment of CPT-11 was the LAST day i had with my mom as she was...she was never the same again.

I wish there was a clear cut answer to this question as with all of the questions that come with this disease. I hope I have helped at least a little. Let me know if you need anything.

You are in my thoughts and prayers,
Rauna

Thanks so much for your insight. It really helps.

My father has only been on the Temodar and as your mom he had little side effects. It is hard to know what health issues he has are directly from that or from being bed ridden since October. We decided to forgo the Temodar becasue we think it is compromising his platelet levels which I am told affects his energy level. he is moving into an inhouse hospice facility in the next few days I hope this will be a much better environment for him than the nursing facility. I wish we could have him home but that's not possible.

I hope you are doing well. Thanks for reaching out.
Christine

Again thank you.

Christine

What other problems is he having if you dont mind me asking...my mom was bed-ridden from Dec. 23 until she passed on Feb 24. I know that it really got her down waking up to not being able to walk or feed herself anymore. We constantly had to fight infection because her blood counts were so low even after she was off of chemo for almost 2 months. She had bed sores that we battled everyday and as soon as we would get one healed she would develop another one somewhere else.

Let me know if you need to talk.
Rauna

My father has been unable to walk since he was diagnosed. with 6 tumors spread out --several in right side one large in back and one in left frontal lobe-his balance and most of his ability on his left side was gone.

He has very low platalets often. He has high bp. but the most pronounced problem now is breathing difficulty. Breathing is very labored and he is coughing and choking often. He get nebulizer treatments and this patch under his ear to alleviate congestion. (I have the name written somewhere) They have asked us to sign a DNR and explained that they can ease his desparation for air with, is it Roxalin, a pain reliever which they explain also eases labored breathing. thankfully, he does not have bed sores. I think he has depression since he has been stuck at this nursing facility. He is on antidepressants. He is up all night long. His speech is very difficult to understand and now he is often confused. He only eats bites of food the past few days. I guess what I don't understand is there hasn't been any significant growth with the tumors but his health has been so rapidly declining.

This is really heart breaking. I live in NYC and he is in buffalo. I have been going home as much as I can .. every other weekend and I just spent a week and a half there. He has been calling me at 4 am asking when I am coming and calling my mom too and asks when we will be in and not to leave him stranded . I wish I could just move there and be with him. This is so hard.

Hopefully there will be a bed in the two in house hospice facilities soon. Alos I contacted a doula for the dying through an org Shira Ruskay NYC and then Sisters of Mercy in Buffalo. They have this service to train volunteers to go and spend time with people who are dying who have small support networks. Our doula came for first time today. she had made him a comforter. She said she will be coming as much as she can. We are so thankful any help my mom can get is great.

Thanks so much for everything.

I am sorry that you are going through this. I know with my mom it was a hard thing to watch...This disease is terrible. The neurological changes come very quickly and the others, the not eating, drinking, or taking medication, and the confusion quickly follow.

We had hospice care at mom's house. She told us before she got really bad that she wanted to die at home and so that's what we did. I was there with her 24/7 except for maybe 3 days out of the 6 weeks.

I don't know if you have read the post titled my experience but that was how the end was with my mom.

Let me know if you need anything else.

Praying for you and your family...
Rauna