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Chemo tomorrow & 1st CA125 since I started carboplatin

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

I've played it out both ways in my mind, trying to prepare myself for the results of the CA125 I'll get taken pre-chemo tomorrow morning (& have the results on Thursday.) It's evident that CA125 is a very good marker for me; faithfully rising with each instance of disease progression. I desparately need my CA125 to DROP with tomorrow's labs. My cancer is now not receptive to taxol anymore, and Doxil was unable to hold it back. I feel like carboplatin is my last 'big gun' chemo and that if my cancer is unaffected by carbo, I can't imagine WHAT I can take to stop it growing. So this is a scary CA125 lab. My CA125 was 229 on my pre-chemo 3 weeks ago, taken right BEFORE I had my 1st carbo infusion. If it is higher than that tomorrow, that'll mean even carboplatin can't kill my cancer now; that it has mutated into something chemo-resistant. & then I'll know I'm in real trouble.

The other worry is that I will develop an allergy to the carbo and be unable to take it, even if it does drop my CA125. I have to have a skin test before every infusion, as many people get an allergic reaction by their 8th carboplatin infusion & I did 6 carbo/taxols in 2008/2009; & now with this new chemo regime, tomorrow would be my 8th carbo infusion.

worries worries. There's no use worrying, I know. I'll get my answer soon enough. There's nothing I can do anyway, either way. Sorry to be whining and venting; I'm just working through this to get my game face on. (((hugs)))

nempark
Posts: 683
Joined: Apr 2010

I send you big hugs and comfort during this waiting period. I am praying for you as I type. May God grant you peace and comfort as you wait!!!!! Vent all you want we love you Linda. J.

CaCowgirl
Posts: 27
Joined: May 2010

Oh, Linda-I too, am sending prayers your way-you are such a warrior & I have been following your journey since my own diagnosis this spring. I opted not to take any of their treatments, but my case was much different than yours. I can totally relate to the venting, though, as this cancer diagnosis is a very scary thing. Good Luck tomorrow! I'll be thinking of you.

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

Linda I pray that your CA 125 will drop tomorrow. I also pray that you can continue to take Carboplatin.

I read in your other post you did post Christmas shopping for 2011. Good for you. I love your positive attitude. I love your game face, too. It brings a smile to my face. I am glad to hear you whining and venting. It is good for you.

Good luck tomorrow with pre- chemo. In peace and caring.

madhura
Posts: 21
Joined: Aug 2010

Linda,

I was thinking about you for the last few days.
Good luck for everything - for CA 125 results and for the chemo.

I will pray for Carbo to work.

Please keep us posted.

madhura

MoeKay
Posts: 292
Joined: Feb 2004

Hi Linda,

Although I don't post very frequently, I think of you often. Please know that I am hoping and praying for a dramatic drop in your CA-125, and that no allergic reaction develops to the carboplatin.

Wishing you all the best in the New Year.

Maureen

nancygt
Posts: 86
Joined: Jan 2010

You are such an inspiration to all of us on this board and I will pray for you as always. And you deserve to vent. You have been very strong through all this but you would not be human if there were not days where a little whining or venting was not necessary. Especially since you expressed the biggest frustration that we all struggle to deal with - lack of control.It is so hard to accept that we can work to get a good medical team, research to fully understand terminology,technology and options, fight to have a life between remissions and during treatment and still have a hope for treatment may fail. I start Doxil in a week or so and hope and pray for results (accepting that a positive result would be a longer remission this time around) as I know you did. So our hopes and prayers are that carboplatin will be tolerated by your body again and give you positive results.
Even though I have not been posting for long, I rely on this discussion board for coping and especially your good information and strength as an example.

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

All the best news and prayers for good enough health.
Sara Zipora

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

Linda you are not out of chemo options. There is gemzar and topeacan Megace is available too. Also there is avastin. There are more but I cannot remember their names off hand. I read a list once and it was long. Sometimes I think we would do better mentally without that CA 125; it scares us to death. I don't understand it actually. Some women relapse when CA 125 is low and some when it is high. Doxil takes the CA125 down very slowly.

I am glad you can share your fears and frustrations. I just got off chemo and had a vitreous bleed in my left eye Christmas eve and had to see a retina opthmologist on Christmas Day! But amazingly it didn't bother me; I am so use to appts and things not going my way I think I accept all the set backs too easily.

I haven't given up on you. Take out your molecular assay and look at the things you can take. Doxil worked for me and was on the No response list!

My prayers are coming your way. I wish I could take you for a lovely walk in the snow. I would have to keep up with you!

I am glad you can vent with us. I try to explain what it is like to other people but they still don't get it.

Love you,
Diane

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

Diane, I am so sorry to hear about your eye problem over the Holiday. You have certainly had more than your share of challenges and you always handle those "bumps" so gracefully!

Your positive outlook and sage advice is always to refreshing!

Karen

Double Whammy's picture
Double Whammy
Posts: 2828
Joined: Jun 2010

That's what this board is for. We understand your fear and worry, not matter what type of cancer we have. No, worry doesn't solve anything, but to tell someone not to worry is so insulting. Of course, you're going to worry and fret! When you stop doing that, we'll worry.

You have my prayers and hopes for a CA125 with low numbers tomorrow.

Diane, so glad to see that you're doing well. Ok, maybe the eye thing was not good, but I hope your latest treatments were effective.

Suzanne

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

Am hoping that your CA125 results are much improved today. I also am sending positive energy your way so that you will be able to tolerate carbo. Whining and venting are a part of this site and you know we always understand!

As Diane pointed, there are still options available to you, so hang in there! We are all here for you!

Karen

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

FIRST THE GOOD NEWS: My CA125 dropped 60 points! It's still in the 200's, but this is the first labs in FOREVER where my CA125 went DOWN, so I am very optimistic that carboplatin will get my cancer back under control! I needed this little ray of hope so badly and I'm so happy for this blessing!

NOW THE BAD NEWS: The bad news (which still can't overshadow the GOOD news in my mind) is that I was unable to get my chemo today because my platelets took a dive to 10,000. So I ended up getting a platelet transfusion today instead. (a bag of platelets looks like a bad of yellow snot, by the way). We scheduled another blood lab and carboplatin at 1/3 strength for next Thursday, and are going to try fractionating the carboplatin and I'll get this chemo weekly at 1/3 strength and see if that will be enough for me to be able to safely get the treatments. It would suck if I found something that appears to be working and my body wasn't strong enough to tolerate it. When I got taxol fractionated-&-weekly it made it an easy chemo, so I'm hoping the fractionated carbo dosage will be easy too. We will see.

My chemo oncologist is so funny. He came running back to the chemo lounge when I was getting my transfusion, all smiles, with my good CA125 news. With him, "no news is bad news", and he always makes me phone to get my test results when they aren't good. But he LOVES to deliver GOOD news and always does that personally. I guess I'd be like that if I were an oncologist, for my own sanity. Anyway, it's been a LONG time since he's had good news to deliver to me and he almost skipped on his way to tell me, sincerely happy for me.

1 tidbit of knowledge I picked up today to share: If you get repeated platelet transfusions, your body will start to reject the platelets, so platelet transfusions have to be saved for really low low counts. He said he'd never make it a routine practice of giving me regular platelet transfusions just so I can stay on carboplatin; we'd try fractionating or lowering the dosage or adding in extra days between infusions, or even change chemo drugs, before he would give me monthly platelet transfusions just so I could stay on carbo.

I'll let you all know if I'm able to get my chemo next week. Your support and posts help me more than you can know, THANK YOU ALL! So it looks like I won't be feeling post-chemo yukky for New Years Eve and better get to the store for champagne and pork-and-saurkraut for a little celebration with my man! :D

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

Linda thank you so much for checking in with your good CA125 news. I'll be honest, I was worried. We can ring in the New Year now- we're all here. Happy happy healthier and healthier New Year to all! I am so grateful for this blog and you LInda.
Barb

nempark
Posts: 683
Joined: Apr 2010

Linda: The same way you saw your doc running back to the chemo lounge, that is exactly how I went running to my husband to tell him the good news. All smiles. Be well my darling, and go celebrate with your man. June.

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

FIRST THE GOOD NEWS: My CA125 dropped 60 points! It's still in the 200's, but this is the first labs in FOREVER where my CA125 went DOWN, so I am very optimistic that carboplatin will get my cancer back under control! I needed this little ray of hope so badly and I'm so happy for this blessing!

NOW THE BAD NEWS: The bad news (which still can't overshadow the GOOD news in my mind) is that I was unable to get my chemo today because my platelets took a dive to 10,000. So I ended up getting a platelet transfusion today instead. (a bag of platelets looks like a bad of yellow snot, by the way). We scheduled another blood lab and carboplatin at 1/3 strength for next Thursday, and are going to try fractionating the carboplatin and I'll get this chemo weekly at 1/3 strength and see if that will be enough for me to be able to safely get the treatments. It would suck if I found something that appears to be working and my body wasn't strong enough to tolerate it. When I got taxol fractionated-&-weekly it made it an easy chemo, so I'm hoping the fractionated carbo dosage will be easy too. We will see.

My chemo oncologist is so funny. He came running back to the chemo lounge when I was getting my transfusion, all smiles, with my good CA125 news. With him, "no news is bad news", and he always makes me phone to get my test results when they aren't good. But he LOVES to deliver GOOD news and always does that personally. I guess I'd be like that if I were an oncologist, for my own sanity. Anyway, it's been a LONG time since he's had good news to deliver to me and he almost skipped on his way to tell me, sincerely happy for me.

1 tidbit of knowledge I picked up today to share: If you get repeated platelet transfusions, your body will start to reject the platelets, so platelet transfusions have to be saved for really low low counts. He said he'd never make it a routine practice of giving me regular platelet transfusions just so I can stay on carboplatin; we'd try fractionating or lowering the dosage or adding in extra days between infusions, or even change chemo drugs, before he would give me monthly platelet transfusions just so I could stay on carbo.

I'll let you all know if I'm able to get my chemo next week. Your support and posts help me more than you can know, THANK YOU ALL! So it looks like I won't be feeling post-chemo yukky for New Years Eve and better get to the store for champagne and pork-and-saurkraut for a little celebration with my man! :D

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

Linda,

Thanks for the update. Your Ca-125 drop is truly good news. I am sorry that your platelets nose-dived, but know that can happen. Hopefully the fractionated dosage will be easier on your platelets! I am thinking that some champagne and pork-and-saurkraut might just be the formula to get those platelets producing! If it works you may want to patent that combo!!

Thinking about you and wishing you lots of good news!! Celebrate the new year!!

Karen

thank you
Posts: 77
Joined: Jun 2009

That's it, remission is coming. I see the platelets as a good sign. You will try less dose of carbo, less toxic but still powerful to knockdown the nasty cells. Next Christmas I will give you my address so you can send me a Christmas card. Same the year after... and the year after....

Enjoy New Year's eve with your wonderful family (wish I had my mom with me... but still thankful she is doing well on the other side of the ocean)

Happy New Year!!

Chrysoula

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

Great News on ca125 drop!!! I can relate after rapdily rising number while on Doxil and the joy with the drop after Gemzar kicked in. Hopefully platelet issue is just a blip in treatment plan. But timely so you may truly enjoy your NYE champagne with your hubby ;-)
Happy New Year!!!
Annie

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

sometimes, once in a while, things work out. that drop in your ca125 did me wonders too. i'm beside myself with happiness for you. i'm sorry about your platelets dropping, however, but that's small potatoes, compared to the big news! of course i'm hoping, hoping, hoping that you are able to tolerate the carbo, then it will be the whole hallelujah chorus ringing out the good news. you know we're all with you, especially now, but always, the whole way, for all the years to come. (from my lips to god's ear). may your body take in the fractionated chemo with ease next week and thereafter. hang in there, linda, stay the course, we're right next to you. and DAMN THE TORPEDOES, FULL SPEED AHEAD!

with love and sisterhood,
maggie

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

sometimes, once in a while, things work out. that drop in your ca125 did me wonders too. i'm beside myself with happiness for you. i'm sorry about your platelets dropping, however, but that's small potatoes, compared to the big news! of course i'm hoping, hoping, hoping that you are able to tolerate the carbo, then it will be the whole hallelujah chorus ringing out the good news. you know we're all with you, especially now, but always, the whole way, for all the years to come. (from my lips to god's ear). may your body take in the fractionated chemo with ease next week and thereafter. hang in there, linda, stay the course, we're right next to you. and DAMN THE TORPEDOES, FULL SPEED AHEAD!

with love and sisterhood,
maggie

susafina
Posts: 134
Joined: May 2010

Hi Linda,
I am very happy to hear your good news. Let/s focus on that. You have the right to be frustrated with your counts. Sometimes your body does become refractory to platelets if you get frequent transfusion. But it usually occurs only if you recieve a lot of transfusions. Sometimes you will get platlets that really boost your counts. this occurs if the donor is a real close match. Get your family to donate if possible.
I am so glad you did respond to the carbo and for that I am glad for you. So lets focus on that for now.
I will be sending good vibes to you from the platlet fairy so your counts go up!!
SUE

MoeKay
Posts: 292
Joined: Feb 2004

Hi Linda,

That's really terrific news about the significant drop in your CA-125!! I'm so happy for you.

I'm sorry about the low platelets, but I'm thinking outloud that perhaps the brief delay and fractionated dose in receiving your carbo may work in your favor to keep you from developing an allergic reaction to the drug??

Maureen

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

Wow, it's working! You seem to do well on fractionized dosing with the platelets so I have this feeling that this will work for you. Once you got into the routine with taxol you did so well. You will this time too.

I knew there were medications out there to help you. I just knew it. You've had a rough year and you have handled it with courage and graciousness. I am proud of you.

Love,
Diane

Kaleena's picture
Kaleena
Posts: 2033
Joined: Nov 2009

Great good news!

Linda, it has been awhile for you and you sure can use some good news. What a nice doc you have too! It makes you feel so much better to have a doctor who can connect emotionally with you.

Thanks for all the information that you provide. It has helped me with a lot of my decisions and doctor visits.

So enjoy the New Year! You sure deserve it!

Kathy

P.S.

To all who are here, I will raise a champagne toast to you!

lociee's picture
lociee
Posts: 102
Joined: Apr 2009

That is good news! Your CA 125 is such a good marker - and your oncologist is such a dear man. Good thing you took advantage of all those after christmas sales!

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Sending prayers your way.....

Laurie

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

Last week when I went to get my 2nd infusion of carboplatin (really my 8th counting the 6 carbo/taxol I had in 2008/2009), my labs showed my platelets at a VERY dangerous 10,000 and I had to get a platelet transfusion instead of my chemo. So we re-scheduled chemo for today, and planned on me getting the carboplatin at 1/3 strength and every week instead of every 3 weeks at full strength.

So, this morning I went in for my pre-chemo labs and my platelets are still only 45,000, less than half the 100,000 they need to be to get chemo. So I'm back home again with no chemo in me, and an appointment next week to get new labs and a consultation to come up with a new strategy if my platelets don't rebound in a huge way. (I think they may try Gemzar next). I'll phone tomorrow to get my CA125 from this morning, just out of curiosity to see if carbo is worth fighting for if it gives me a further number drop.)

I'm SOOOOO frustrated that my bone marrow is no longer strong enough to tolerate the 1st drug that really seems to be working and actually dropped my CA125!! There is a lot to be said for taking a 'watch and wait' attitude to chemo apparently, as it does you no good to take constant chemo to keep your cancer under control if you ruin your bone marrow doing that, and then can't get powerful chemo drugs when you need them.

So that's how I am looking at this. I am being forced to take a little break from chemo; my body is trying to tell me something. So I get another week off. And instead of feeling post-carbo yukky this afternoon, I feel physically great! & I'm going to try and live in the moment and enjoy this extra week of feeling good and not worry about something I can't control.

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

Damn! This can be so frustrating. You have the right attitude. You need to take care of you. On my 8th doxil my platelets stayed low at the end. YOu are right; we do need a break from all this chemo. Platelets seem to be the problem for all of us.

Take care of yourself and relax. You have an amazing attitude. I don't think a week off is that much of a risk. We are here if you need us. Is your garden buried in snow? How about a nice massage? A new outfit?

Love you,
Diane

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

Damn! This can be so frustrating. You have the right attitude. You need to take care of you. On my 8th doxil my platelets stayed low at the end. YOu are right; we do need a break from all this chemo. Platelets seem to be the problem for all of us.

Take care of yourself and relax. You have an amazing attitude. I don't think a week off is that much of a risk. We are here if you need us. Is your garden buried in snow? How about a nice massage? A new outfit?

Love you,
Diane

Always Hopeful
Posts: 234
Joined: May 2010

I'm pleased to read in your last paragraph that you are NOT going to let this get you down. Living in the moment is exactly what we all need to do...although not always easy.

Gemzar has been quite beneficial for me with minimall side effects. Even with pneumonia, a UTI and sinus infection I was diagnosed with on 12/22/10, my numbers were good enough for me to not have to be hospitalized.

Keep the faith and stay strong. Enjoy your extra non-yukky week!

Peace and hope, JJ

nempark
Posts: 683
Joined: Apr 2010

I cannot tell you not to worry because we all know how that is. I have been looking for your post and I am happy to know that you do feel physically great. Enjoy your week off. May our Great Creator bless you and give you the strength and health to conquer this disease. Lots of hugs. June

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

I know you must be frustrated. I know how you want to do all you can to beat this cancer. You still have a great attitude which I truly admire.

Your expression about "watch and wait" attitude with chemo is what my Florida Gyn/ono told me last year in November (when he told me I would be on chemo within the year). That he wanted to wait as long as possible so the bone marrow can handle the chemo when needed most. I think I will need chemo soon, but I have had 17 months of being chemo-free, for which I am very thankful. It has been 2 years since my surgery in Jan, 2009. When I remember all that you have been through, I am so thankful.

I too am "living in the moment". Tom and I are going on another cruise. We are going on the Norwegian Epic which is one of the ships which holds 4000 passengers. We are going to the Caribbean. We tried to positive and booked the cruise, and then took out travel insurance in case we could not go. I am so glad that we did not need to use the travel insurance.

I am tolerating the "hormone therapy" with minimal side effects. The only thing I have noticed is my "hot flashes" are hotter, more frequent and last longer. So I hope that means the pills are working.

I hope your platelets continue to increase, and you can get back on a treatment plan. In peace and caring.

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

here's hoping your platelets rebound, as they should, and you'll be back on the chemo that has been lowering your ca 125. it's just one trial after the other..... i believe the platelets will be soon up to snuff, you'll be able to take the fractionated carbo, and it will work. i honestly believe this. i have always had faith in your overall health and well being, and despite the temporary setbacks, you will prevail.

it makes me glad that you will be able to enjoy the weeks off chemo and feel good doing so. there's no rush. let your body heal enough so that it can withstand what comes next. there are always choices, different kinds of treatment protocols, etc. in the meantime, do all the things that give you pleasure; we're all planning on seeing you through this.

love and sisterhood,
maggie

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

Linda, I apologize for not being part of this conversation earlier. I have not been here very much lately.

I'm sorry you are running into this difficulty and have this added stress. Hopefully your body will respond and this dilemma will resolve soon and you will find the treatment that is effective for you. Diane's response has some optimism.

Just a thought - I remember when my platelets took a dive during treatment and I did the following which I credited for my rebound: MEDITATION. I imagined my bone marrow manufacturing white blood cells that were carried throughout my body. I imagined my cat's purring sound (she loves to lay on my stomach and purr away) as the engine that fueled the factory. Well within days my numbers rose enough to avoid the neulasta shot and resume chemo.

Meditation is a powerful tool that we can harness to help our body heal. My prayers are with you. Take heart dear Linda. Sincerely, Mary Ann

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