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Your CSN Staff's picture
Your CSN Staff
Posts: 200
Joined: May 2008

We hope that you find this new group engaging and helpful!

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

You're the BEST! I'll pop into our old thread and let them know where we are, unless you have already done so. Many many thanks!

barb55's picture
barb55
Posts: 91
Joined: Jan 2009

Hi- I just posted a short letter but not sure if it came through. I may have deleted it unintentionally. I don't want to repeat myself unnecessarily - Am I in the right place now? I wanted to check in with my experience with Stage 3 UPSC - almost 1 year since the last treatment. I just thought I could offer some hope to those of you in the midst of treatment and continue to stay in touch with others going through this. This time last year I was the one without any hair and boy was I cold. I did get some lovely knitted hats from friends. Linda- I really do love your new photo. I'll stop here because my thoughts may have gotten through. Sorry for my lack of blog knowledge- I need some practice.

deanna14
Posts: 733
Joined: Oct 2008

Thanks so much for the new board. Hopefully this will help with the waiting. Thanks for doing that Linda.
barb55... What treatment did you have and what are your follow ups?
May hair is steadily coming out, it was so thick, I think it is going to take a while. I'm just ready to stop shedding all over the house!LOL

Ro10's picture
Ro10
Posts: 1391
Joined: Jan 2009

Linda thanks for getting this new board. I hope it helps newcomers with the site. Do you think we should each put a brief history on this new site. Linda should our subject line be about something specific for people to find the particular information they are looking for....such as chemo, hair loss, metallic taste,resources, web sites or whatever. Linda hope you are feeling better and stronger today. Your body should start building blood cells again to get you over the hump. Deanna sorry about the constant hair loss. I, too have thick hair, and expect it will not come out as quickly or evenly as I would like. Theresa hope your soreness is passed. Hope you are strong enough to take care of your daughter. Marge hope you are doing well, too. Peggy you and your husband remain in my prayers. Day 7 post chemo and still feel good. Hope number 2 chemo will go as well. I am reading a really good book by Kim Carr called Crazy Sexy Cancer Tips. She has a lot of humor in the book. Blockbuster also has the DVD available. I borrowed the book from the library at the cancer center. Might be something to check out for a pick me up. Someone also gave me a book "Praying Through Cancer, Set Your Heart Free From Fear" by Susan Sorenson/Linda Geist. I read the book before my surgery and did not take it to heart, as I was going to have surgery and everything was going to be okay. Those devotionals mean so much more now that I am going through treatment. HUGS to all.

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

You can see how Marge started a new thread about her CT-scan. So the way I see it working on other Discussion Boards here, when anyone has a question about CT-scans, or wants to let us know they are having a CT-scan or waiting for or got scan results, they might want to REPLY to that particular thread (Marge's CT Scan thread), and it'll bring it back up to the top of our thread list so we see a new post is there. I don't think we need to make a huge effort to re-create things we've already said, since our old long long long thread came here with us. And I know if I was newly diagnosed with UPSC, I would GLADLY read that thread from beginning to end, desperate to find some 'real time' information I could use to make decisions and quiet my panic and fear.

So if you're having a new symtom or for anything that pops into your head that you want to discuss, instead of just replying to a thread, feel free to start a new one. (Examples: Ro's book recommendations could be the start of a new thread on Good Books to Read; or Deanna's question on split fingernails might warrant its own thread.) The nice thing about having separate threads for specific subjects is that I think the SEARCH box on this website is related to thread 'Subject' titles, and separating out our various topics of discussion may make us more accessible to those with other cancers with specific questions and ideas on topics we also are addressing. Things are so quiet for me now between chemo rounds, and I'm pretty much house-bound this week with my low counts, so that I honestly can't think of a thing to start a new thread about today. But I know that will change, as this journey seems to have unending twists and turns for us all.

Thanks for the book recommendations, Ro. I'm always looking for something good to read. I posted my 'baldy' photo again for you girls just now dealing with hair loss. You gotta be able to laugh or you'll cry! I tried to take a close-up shot today of my almost-gone eyebrows and lashes, and if it comes out I'll post that. Now THAT is a pitiful look. HA!
:D

irishohiogirl's picture
irishohiogirl
Posts: 10
Joined: Oct 2007

Linda,
i had frequent issues with low counts throughout my treatments. Many times they had to be delayed until my counts could come up. i found this very frustrating. i tried many things to try and elevate them but it wasn't until i started drinking echinacea tea by Yogi tea(available in local grocery store)that they improved on a steady basis. Of course check with your doctor's office first but it worked for me! Big Hugs! kelly

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

I've had echinacea tea before and I like it, so I will look for it again. I grow several varieties of echinacea in my flower borders but have never read of a way to make your own tea from it, and they are dormant now under the snow anyway, so I guess I need to get to a store.

Did they give you transfusions to get you through your chemo? I had a transfusion last Monday for low hemoglobin, but today I can already hear that whirring in my ears again when I bend over and have the heart-pounding when I go up a flight of stairs. So I'm pretty sure my hemoglobin will be low again Feb. 16th when I go for my next chemo unless my body starts recovering good this week. The delays are so scary because there is a science to the 3-week wait between rounds and the extra week may allow my body to recover better, but it also give the cancer cells a chance to recover too. I'm trying to get my oncologist to allow me to have my blood drawn on Monday and a transfusion that day if my counts are too low, with chemo the next day on Tuesday. We'll see what he says. I think he is getting a little impatient with me being 'Jr. Doctor' on everything, inserting my own ideas endlessly every time I see him. Ah well, that won't stop me. HA!

irishohiogirl's picture
irishohiogirl
Posts: 10
Joined: Oct 2007

Hi Linda! I'm sorry. I just assumed your low counts were immune system related ie: white blood cells and/or Absolute neutrophil counts. That's what mine were and that's what the echinacea tea helped. I hope your hemoglobin improves soon. I CAN totally empathize with your anxiety about the science and the amount of weeks between treatments. I experienced that as well. My white counts and ANC were always very low despite them giving me an injection of Neulasta a day after every chemo. I love your pic by the way. You look stunning. I always had long hair but after this experience I'm going to keep it nice and short. It's been very liberating! Don't give a second thought to being junior M.D. it's very therapeutic to have a "say" in your care. Let us know how your hemoglobin is when you get the reults! Big Hugs!
Kelly

deanna14
Posts: 733
Joined: Oct 2008

Well, I got chemo #2 out of the way today. My WBC were 3, but I guess the ANC was okay, because he let me have my treatment. My Hgb was 11.0 and the last one was 12.8, so I hope we are not headed for postponements. I'm gonna start eating spinach and stuff every day to try to get that back up.
It worries me to hear you talk about the whirring when you bend over. I get a tingling sensation in my lips and tongue when I bend over. I feel like I can't catch my breath sometimes when I am active. Especially when I try to talk a lot. I don't want to postpone... any other ideas for getting the counts up.
I forgot to ask him what the CA 125 was today, but it has always been normal, so I guess it isn't a good indicator for me anyway.

Blessings to all,
Deanna

sleem
Posts: 92
Joined: Feb 2010

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