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Denied my chemo AGAIN! Platelets too low even after an extra week & a transfusion

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I just want to get this LAST ROUND in me and move on! (sigh). Last Monday when I went in for my scheduled chemo, my platelets were 27. My red blood cells were also too low, so I had a blood transfusion and was told to come back today. Today all of my other blood work was really good, but my platelets were 64. 100 is supposed to be the cut-off but my oncologist would have let me get my LAST round of chemo if I hit 85 today. Now I have to go back again Thursday and try again. I'm bummed.

I repeated the comment posted here that "UPSC is not curable" to my oncologist, as he always tells me that we are going for a cure for me. He said that the best opportunity for a cure is BEFORE any recurrance or post-surgery metastisis, and that after a recurrance he would consider additional treatment as 'managing' the cancer and no longer call it 'seeking a cure'. But a cure is possible if the initial surgery, chemo, and radiation can kill all of the cancer, and that is why they throw everything they have in chemo and radiation at the cancer from the get-go. He encouraged me to have the full gamut of radiation NOW, and to not 'save' any treatments for recurrance; he said that we will keep working towards a full cure for me until that hope is taken away by a recurrance. Then he'll switch gears and work to keep me alive and my cancer under control. But for now, he still feels a cure is a possibility. He confirmed that recurrance usually happens within the 1st 2 years after the initial treatment, and that once you pass the 2 year mark with no recurrance, you are almost home free. ((((Peggy)))); I know you are there at 2 1/2 years!!

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

I am going to have a good cry for you or with you. I too was at this level of trying to decide on my 6 chemo.....I was so very sick. I did not know what to do. I did not have all of you wonderful ladies and your knowledge to help me make a decision. But I knew my body and my body said... NO MORE CHEMO!! I had to stop at 5 chemo sessions. I went right on to my internal radiation and tried not to look back. My Dr assured me that she could not say that 6 would cure me and 5 would not. She supported me 100%. I am at 2 years last month since my last chemo, then I had my internal radiation after that ...........so I am so VERY close to hitting the 2 year survivor mark. I was actually diagnosed in 2006 in Oct. so on the calendar I can be a 3 yr survivor, but in reality ... not. But I will be. What can I do to make you feel better????????? HUGS PRAYERS TEARS AND SUPPORT..........

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Hi Linda,

I'm so sorry about the delay - it is torture waiting (I'm there with you). Thanks for the encouragement from your doctor about "going for the cure". I like that!! I have a new doctor now - haven't seen him yet, though. I'm curious what his take will be on all this.

I get my CT scan today - and then continue to WAIT to see the doc and get the "bottom line".

Has anyone heard that "UPSC doesn't go to the brain!". I am getting scan of everything except the head. I asked why not the brain and was told that it wouldn't spread there - what have you gotten?

Hang in there Linda. Mary Ann

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Thursday I'm to try for my final round of chemo again. My oncologist wasn't planning to see me on Thursday in a formal appointment (since he saw me 3 times in the last 2 weeks already), but was planning on stopping back to talk to me while I was getting my chemo to set a date for my CT-scan and initial appointment with the radiation oncologist in 2 weeks. He seemed pretty confident I would be infused Thursday. But there's not much time between a Monday and a Thursday for my platelets to climb as much as they need to. If I can't get my last round on Thursday, I'm going to phone him when I get home and ask to move on to the radiation. I'd love to complete the 6 cycles, but knowing that Peggy only got 5 in and is NED after all this time; and that Marge only did 4 cycles and is still NED,....I could be okay with just doing the 5 rounds. I am worried about delaying the radiation this long, as I tried unsuccessfully to get it sandwiched in after Round 3. I guess they were right that I might have had trouble getting my chemo in if I'd had the radiation first, considering all the trouble I've had getting it in as it is. It shows how individual every treatment schedule has to be. I don't feel sick, and yet my sugar is sky-high and blood pressure very low and I've been anemic for the last 3 rounds. It's just so hard to be so close to the end of chemo and not be able to get the last leg done.

Funny; it'll be close to 5 weeks since my last round of chemo and my hair hasn't grown back at ALL, so I think I'll be bald long after I'm done with chemo. The chemo must work in your body a long time, as my CA-125 dropped a little bit in the 1 week delay, from 12.5 to 12. What would I do without you all?? I can only imagine how alone Peggy felt with these huge decisions to make without any 'real life' reference.

I've made plans for someone to do my role in my business while I am getting the daily radiation, a significant $$ cost I hate to incur, but I don't want to take the chance of not being able to fulfill my obligations. So, although I'll have radiation treatment every morning, I look forward to sunny afternoons in my garden instead of being tied to the computer until late in the evening trying to keep my head above water. Sometimes you just have to treat yourself and focus on getting well.

deanna14
Posts: 733
Joined: Oct 2008

I'm so glad that you are going to treat yourself to having someone keep up with your business obligations. I think you will glad that you did. If you are careful about what you eat, you shouldn't have too many intestinal problems. After about 1-2 weeks, I started to feel very fatiqued in the afternoon and had to treat myself to a nap. So I think you will enjoy your afternoons in the garden and be at leisure to treat yourself to a nap if you feel like it.
If you don't get then chemo on Thursday, are not going to get it at all? I have only had 3 doses and am already having to delay. I hope I can get through all 6 and he said maybe a 7th if I could tolerate it.

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

Linda,

Keep the faith and take care of yourself! My prayers are with you, I'm sorry you have to go through all this delay. Take the naps, they are wonderful, I took many towards the end of my last treatment and after my last treatment.

Deanna, BOLD IS BEAUTIFUL. You look wonderful!!!!! I used shampoo for the first time this morning. I was so excited.

MIND, BODY AND SOUL!

Hugs.

fuzzytrouble's picture
fuzzytrouble
Posts: 210
Joined: Feb 2009

Hey Linda, so sorry that you couldn't get your last treatment. I had the same problems but not the length of time that you had to go. I sure hope the platelets come up by Thursday. You have gone this long without another treatment and time is precious to us, maybe the Dr. will let you have your radiation now. Good luck

Sharon

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

I feel so bad for you. I know how much you wanted to get that last treatment on Monday. I hope you are able to get it on Thursday. It is a tough decision you have to make about waiting for the last chemo versus starting radiation. If your platelet count is still down, I am not sure they will not want a longer rest period to start radiation. Radiation can effect the blood counts too.
I am glad you will have time to enjoy your garden in the afternoons while you do get radiation. You are right that you need to put you first and focus on getting well. That is hard for most of us to do. I'll say some extra prayers for you that you can get your last chemo on Thursday. HUGS to you.

cookie1948
Posts: 79
Joined: Feb 2009

Linda,
I hope all comes together for you very soon and you are NED. You are the one who explained NED to me and what it meant. You are such a wonderful human being and i have the feeling you are going to CURED soon. Maybe the 6th chemo is not to be as maybe YOU DON'T NEED IT. You are sooooooooooo brave and positive and help all of the others. You are informative and hopeful for all, and that is what i wish for you. CANCER FREE FOREVER, i am praying for you!!
Cookie :)

Rribbit
Posts: 9
Joined: Apr 2009

I'm new here - what is all this talk about NED?

deanna14
Posts: 733
Joined: Oct 2008

Welcome, Rribbit. NED stands for No Evidence of Disease. The most common follow up, I'm told, is serial CT scans. We all hope for the doctors to tell us that our CT scan shows No Evidence of Disease!
Happy that you found us here, sorry about your diagnosis. This is a great site for support and answers to questions from the ones who have "been there, done that!" This is a great group of ladies on here. Feel free to contribute or ask anything.
I read your other post also, and I'm curious if a gynecologic oncologist did your surgery? Have you seen a gynecologic oncologist? If not, I would seek a second opinion from a gynecologic oncologist. I am not familiar with the cell type that you mentioned, but I know for UPSC, statistics show an increased survival rate if staging is done by a gynecologic oncologist.
I will pray that you will be healed as I do for all of us. God Bless you and take care of you!
Hugs,
Deanna

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