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Linda--how are you? Any word on that increase in CA125? Did you get retested?

hopeful girl 1
Posts: 454
Joined: May 2010

Linda,

I have been thinking about you. What is going on? Have you heard any further feedback from your doctor regarding the increase in CA125? Are they going to continue with same chemo or change? Are you going to get it retested?

Sending positive thoughts and hugs your way!

Cindy

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

GOOD NEWS TODAY! I was finally able to get carboplatin chemo this afternoon (after being turned away the last 2 weeks due to low platelets)! My platelets were just high enough to ‘make the cut’ . My positive segs (the immunity part of white blood count) were actually lower than the ‘go-chemo’ threshold, but I was allowed to get the chemo anyway at the fractionated 1/3 strength dose and I will come in Monday, Tuesday, & Wednesday for Nuepogen shots to bring that up. So we scheduled out the next 2 weeks: Nuepogen shots every M, T, & W; and then labs & consultation & chemo at 1/3 strength every Thursday. Of course, that’s all dependent on me being able to keep my platelets at safe levels, but I am optimistic that I’m past that now. So Vic and I were both happy that I’m still strong enough to battle on. It's scary to think that your body may not have the strength to get chemo when you really need it.

I had another CA125 drawn today and won't get that until tomorrow or next week. Today's pre-chemo labs will give a slightly truer picture of what the 2 chemo delays may have meant. Regarding the one-week 100-point jump in my CA125, my oncologist just said "we'll keep an eye on it". I know that as long as I am getting chemo, I am doing all I can about it. He also said "Sometimes cancer cells let off CA125 protein as they die and sometimes that causes a rise in the CA125 number, so let's assume that's what happened and that the carboplatin is working." He didn't look too confident in that theory, but I'll go along with that idea anyway as there is no advantage in imaging the worst.

Isn't it wierd how happy cancer patients are to get chemo after we've been denied it a couple of times? We equate it with hope and life after awhile, I guess. Going over there 4 days a week is a regular interruption in my life, but I will try and combine the Nuepogen-shot-visits with lunches with friends and shopping and other treats and it will get me out of the house during this snowy winter. (I tend to hibernate in January & February).

I just woke up from my pre-chemo benedryl-induced nap, and will probably be up all night now from the pre-chemo steroids that seem to kick in as soon as the benedryl wears off. That's the excuse for the long post: yak yak yak from the steroids! HA!

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

You're such an amazing woman....I can read between the lines of a woman who is positive and will never give up. Hope that rubs off on me some day.

Happy you got into chemo this round and yes it's amazing how missing one chemo and hoping to start up again, is how we think. It's the drugs my dear!!!

Hang in there and know I'm thinking about you....throwing more positive vibes your way~~

Jan

hopeful girl 1
Posts: 454
Joined: May 2010

Linda,

Glad to hear you were able to get your chemo today-yah platelets-for coming up to just enough to get it! I am sure they worked hard to get there.

I will be sending positive thoughts and prayers your way, that your CA125 test will be lower this time.

Rest up and take care this evening.

Hugs,
Cindy

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I am so happy that your platelets came up this week. What a schedule you will have with Neupogen shots three days and the chemo the 4th day. Will Neulasta not work for you since you are getting chemo every week? I know the neupogen works quicker.

Glad you are combining the trips to the cancer center with fun activities, too. You are such an inspiration to me. Hope you get good news on your CA 125 , too. In peace and caring.

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

it's as good as any we've heard along this path. and i think it makes sense. i can guess he doesn't want to get too hopeful, and mislead you, but what the heck, it's just as possible as anything else. so glad the little platelets made it up enough to get the chemo. treatment is a full time job, as we know, but combining it with some fun things certainly does help. hang in there girlfriend, we're right here.

love and sisterhood,
maggie

kansasgal's picture
kansasgal
Posts: 125
Joined: Aug 2009

Hi, Linda!

If you stepped outside today and felt a breeze from the southwest, it was my huge sigh of relief that you were finally able to move along with chemo!

A BIG hug from Sally

Sara Zipora's picture
Sara Zipora
Posts: 231
Joined: Sep 2010

Dear Linda,

So happy you checked in and as usual you are such an inspiration. I just completed my first six round Chemo, but with an initial Dx of Stage IV B, don't expect remission to be more than six months, I hope and pray that long, dream of longer! Your posts are so positive and upbeat, thanks and we're all rooting for you.

By the way anyone out there on Macrobiotic Diet?

Sara Zipora

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

Finally things went well! You are so right; we moan about chemo and then some times feel desperate to get it. Somehow we march on. Do you think you could give yourself neulasta? It would save some trips.

Diane

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

I'm relieved to be able to share that I was again able to get my carboplatin today at 1/3 strength,...2 weeks in a row now, so that I'm feeling pretty optimistic that I'll be able to safely get the carboplatin at 1/3 strength once a week instead of full strength every 3 weeks. At least I'm getting some kind of chemo to deal with whatever caused my CA125 to jump 100 points 2 weeks ago. I didn't bother getting my CA125 from my pre-chemo draw last week, and will probably wait until next Thursday to get my CA125 results from today's pre-chemo labs. I don't want to fixate on the number when I am already doing all my body will allow me to do, so why torture myself? But I will ask next week, just in case the carboplatin looks like it isn't really working and I need to start advocating for a new strategy. But I sure am hoping the carbo is getting my cancer under control again, and that my number starts dropping week by week. Like I said, I'm doing all my body will let me, so I am just leaving this one in God's hands and going with the flow here.

I ate all the potassium-rich foods I could think of all week, but today my oncologist said the most important thing you can do to raise your potassium level is to control diarrhea and vomiting. I didn't really have either, but looking back I did have really loose bowels a couple days before that blood lab last week. So that's my tip for the day! HA!

Funny, but with the pre-chemo steroids and meds in me, I feel better now than I did all week, even with the carbo cranking around in there too. Drug-induced well-being perhaps, but still nice to feel 100%. It's my husband's birthday and we came back from chemo and I made us both some Thai carrots, strip steaks, hand-cut-by-me french fries, and a raspberry dream cake from our favorite bakery. How sick can I be when I can eat like that, and an hour later the steroids are whispering to me "Be sure and get another little sliver of that cake before bed!!"

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Was happy to hear that your counts continued to be good enough so you could continue your chemo. 1/3 dose might be just what your body can handle.

The birthday dinner sounded wonderful and bet your husband was thrilled to have such a great celebration...the menu sounds DEE-LISH!

Hoping things continue to go so well for you!!

Karen

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Glad things are getting on track for you after the rough start. Take the well-being anyway you can ;-)
btw, my husband's birthday is tomorrow...it'll be NY style cheesecake for him.

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

Hi Linda
So glad your counts were back up and you could continue chemo.
Those steroids are wiley little devils, aren't they - I've found my hand in the biscuit barrel several times under their guidance..........!
Onwards and upwards - your continued positive approach to dealing with all this is inspirational to me and, I'm sure, to others on this site.
Thinking of you.
Helen xx

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Linda, I am so happy for you that you were able to continue with your treatment.

I am glad that you are feeling good, too. Birthday wishes to your husband. What a nice dinner you made! I feel tired and I am not on anything. When I read your posts, I get that extra energy I need because of all the stuff you are going thru and you can do all that stuff!

Happiness to you!

Kathy

Northwoodsgirl
Posts: 572
Joined: Oct 2009

So happy to hear that you were able to get chemo again Linda. So much for potassium rich foods...I am happy that you are finding joy is the small things as that is something fighting cancer makes us all realize...enjoying the little things. That raspberry dream cake sounds wonderful! Please post again as all of us "sisters" care about you and value your insights and sharing/caring.
Lori

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

I am glad you can be back in treatment. I think you do well with fractionized doses. Do you think you could give yourself neupogen shots to save running back and forth. I gave one in my abdomen. I probably have more roly poly tissue to stick it in than you do!
Love you kid, for tenancity, courage, and humor when the roof is caving in.

Love Diane

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