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Just a quick update, after 5 weekly low-dose taxol chemos for my recurrence of UPSC

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

I finally got my CA-125 from my pre-chemo labs Monday. It's down to 54.9 now, still not the magic "under 35" we are shooting far, but a good ways down from the 155 CA-125 in November that started my 'recurrence' diagnosis and started this second bout of chemo. The last 2 weeks the drop in my CA-125 has been quite small, so we talked about the possibility of adding in 'fractionated' 1/3-strength weekly carboplatin to my current single agent 1/3-strength taxol chemo. But my chemo oncologist said that he'd want a CT/PET scan before we change treatment options, since he isn't a firm believer in CA-125 as a diagnostic tool, although it had been a pretty good treatment marker for me. It's been almost 10 months since I last had carboplatin, so enough time may have gone by for me to not be 'platin-resistant', which can happen if you go back on carboplatin or cisplatin too soon after your initial treatment protocol if your remission is short like mine was. I continue with Neupogen shots every Tuesday, Wednesday, and Thursday, which cause me no bone pain or anything and seem to be keeping my white count in the safe range. My hemoglobin and platelets are also at safe levels, so this low-dose weekly taxol is a really easy chemo to do. I'm bald again, but no neuropathy or pain and my digestion has finally recovered. I even ate a medium bag of popcorn watching 'Avatar' in 3-D (GO TO THIS MOVIE!!!!) this afternoon with my husband after my shot.

My CT/PET will be in early February and I will also meet with the head of Women's Health, (a gyn-onc) about my idea of having them cut out the enlarged lymph node from under my arm (if it lights up again on the February PET scan!) and do a fresh tissue assay to see if my UPSC is EGRF or HER2 and chemo-resistant in some way that would make consideration of Herceptin or Avastin in my chemo cocktail worth fighting for. ((((((Big Hugs)))))) to all my UPSC Sisters! I feel good! This hasn't been too bad so far.

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

I am glad you are tolerating this low dose chemo so well. Your labs are keeping good. The CA 125 continuing to drop is great news. Glad you are tolerating the Neupogen shots without bone pain, too. It is good news that your digestive tract has recovered also.

I saw 3-D Avatar last week, and it is really good. I enjoyed it much more than I thought I would. So you are in the "Bald is Beautiful" group again. Your hats and wigs should feel good now that the cold weather is there. In peace and caring.

livenow09's picture
livenow09
Posts: 63
Joined: Apr 2009

Aloha Linda
glad to hear you're hanging in there and looking on the bright side; I remember you everyday and send you positive thoughts and energy
Marie

deanna14
Posts: 733
Joined: Oct 2008

I am happy that you are tolerating all of this so well. Thanks for keeping us posted. I want to see Avatar! Sounds like you are slowing down a bit and able to take an afternoon with your hubby to enjoy a movie together. That's what life is all about! I love ya friend. Feel my great big cyber hugs and prayers! Once again grace, strength and courage.

Cecile Louise's picture
Cecile Louise
Posts: 135
Joined: Dec 2009

for sharing such good news...I'm so very glad to hear you're feeling good and the treatment hasn't put a hitch in your stride. It's always wonderful to read your posts, no matter the subject, so thanks for keeping us all updated on your journey.
Avatar in 3D, huh? I've been wanting to see it, but y'all have clinched it for me. I'm going! And soon!

Big hugs to all,
Cecile

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

Hi Linda, thanks for checking in. You are important on so many levels to me. I'm going to look back at some of my old notes from Dr. Schwartz at Yale about HER2. This group is so on top of things that I don't know if I have anything new to add but I will surely look. I can certainly agree to the good medicine a movie like Avatar can bring. I saw it yesterday. It was impressive. I don't understand all the controversy around it. I just enjoyed entering an alternative world for a few hours.
Barb

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

I think of you every day. You are such a fighter. I am glad the chemo hasn't been too bad. I had such a hard time with taxol it scares me to take it weekly. But then the steroids were so helpful I know I could do it. Love and think of you every day. ((((hugs)))))

Diane

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

Linda,
It's great to hear how well things are going for you - and I'm sure your positive attitude provides a booster to your chemo treatments.
My thoughts are with you -- and thank you for sharing your experiences.

Annette

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

Thanks for the update. You are an inspiration. Hang in there.

All the best. With prayers, Mary Ann

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

My Ca-125 dropped another 5 points when I had my labs yesterday before my 7th weekly taxol, so I guess this chemo continues to work! It’s working SLOWER than I want it to, but at 50.5 it is getting closer to the magic ‘under 35’ it needs to be before my next PET/CT-scan. If I can get it under 35 and get a good scan with no disease progression, I think they’ll give me a 3-month chemo break. So it’s a goal!

My regular blood counts were lower than ideal but still good enough to get chemo. The WEEKLY physical exams (eternal palpitation) and the WEEKLY blood labs are really reassuring. As much as I LONG for the blissful ignorance of NOT being constantly monitored, it is nice to be reassured so often that I'm doing fine.

thank you
Posts: 77
Joined: Jun 2009

Always happy to hear you are doing well!!!!

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

Linda I am so glad you continue to tolerate the weekly chemo, and you continue to get results. I hope you reach that magic number soon. Glad you continue to be reassured that you are doing okay. You remain in my prayers. In peace and caring.

Teresa 61's picture
Teresa 61
Posts: 84
Joined: Dec 2008

Linda, happy to hear your CA 125 continues to drop , hope you reach that magic number so you can have a break from chemo.Always thinking about you......
Ro, have you thought about signing up on facebook? I think you would like it.... hope all is well for you on your appointment in Feb.

deanna14
Posts: 733
Joined: Oct 2008

Good to see you on. How are you doing?

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

I have been wondering how you have been doing. It has been a while since you posted. Did your back pain go away? Is everything else going okay for you? Have your check-ups been good? I hope so.

What is the advantage of facebook? My husband has an account on facebook, but I did not see the advantage of being on it. Some things I post here, I would not want everyone to read. In peace and caring.

Teresa 61's picture
Teresa 61
Posts: 84
Joined: Dec 2008

Had my 2nd post chemo check up Jan. 20th. Had a chest xray and blood work , plus the usual vaginal rectal that we all love.. Ugh! Dr. said everything looks great and to come back in 4 months.
I'am still having pain in my legs and hips and have nerve damage on my upper right leg. Not near as bad as it was in July when it started.I'am sure it was caused by the chemo and radiation.
Ro, I love facebook. Alot of the girls are on there. We all post pictures and for me it makes me feel closer to everyone. Mostly everyone just posts everyday living stuff. I do not go in to detail on facebook like I would on this site.
I'am not very good at writing my thoughts down so don't post very often. I do come here often to see how everyone is doing.Feel like we have all known each other forever. I also get worried when I don't see a post from one of you when some time has past.......

kayandok
Posts: 1223
Joined: Jun 2008

Hi Linda, hadn't seen an update from you and so popped over and was happy to see your good news. I hope that CA continues to go into the basement!!!!
Hugs,
Kathleen:)

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

I've had 9 rounds of the weekly taxol now for my recurrance; and the PRE-chemo lab (so after 8 rounds) has my CA-125 down from its high of 155 to 44.6. That's still a long way from my CA125 low of 11, but it appears the weak dose of taxol is still working and that we will stick with this treatment schedule as long as it continues to drop (although the drop is so SMALL each week that this seems to be taking FOREVER!) I am still getting taxol every Monday and neupogen shots every Tuesday, Wednesday, and Thursday. I schedule all my face-to-face business meetings and phone conferences for Fridays and try to have a sleepover with my grandkids each weekend.

I get very fatigued each day now, and it is hard to do meaningful grant work unless I pick my times when I am at my best. But my business is thriving as my staff and sons have really stepped up and I have promoted some key people and am training everyone as fast as I can to take over my responsibilities.

I feel blessed that I still have no pain, no nausea, no neuropathy, and I STILL HAVE A FEW EYELASHES !! HA! I am bald, of course, and I get frustrated when I need to lay down when I really WANT (and NEED!) to so something else. But otherwise I'm hanging in there.

I read all the posts even when I don't respond. I think my recurrance is a downer most of you don't need right now, and not something I want people in their initial battle to even think about, and it sort of invalidates my opinion since you may no longer want to do anything the way I did it, in hindsight. But I love you and support you all and pray for you. And I wanted to get an update here for anyone worrying about me. I'll be having a CT?PET scan sometime in February and then will have some real news to share, good or bad.

PS: Did you hear about FRAN??? Mets to the brain and now she's NED!! NED!!
:D

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I am so glad you posted how you are doing. I find it very helpful to see that there is treatment if I do have a recurrance after my inital treatment. Thanks for sharing your journey. I think you are inspirational.

I am new here, and hate to ask but, who is FRAN? I am glad she is NED. I just learned that term and it sings to me like a Green siren's song.

Will be thinking of you and praying. I had chemo today and thought of you guys here.

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

Happy to hear that you CA125 is coming down, I know it's frustrating that it's happening slowly. You are an amazing women and take that nap! You are in my thoughts are prayers everyday. Love you girl!!!!

MIND, BODY AND SOUL

Hugs, Marge

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

Linda, I am so glad to hear that you are doing well in spite of the fatigue. No Nausea and NO neuropathy and a steadily declining CA-125 is GREAT news!! Also was so thrilled to hear the good news about Fran! WOW!!!! I am so happy for her and her family!!!

Karen

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

Glad the taxol continues to work for you. Sorry you are so fatigued. Listen to your body and take that nap when needed. In peace and caring.

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

Hey, wait a minute. Please don't censor yourself in an attempt to protect us. This is a forum for everyone. If you want to post, I want you to post. I think your journey is very important and I, for one, am here to support YOU. I'm sure many others join me in those sentiments.

I have no grand delusions about the future - hope yes, delusions no!!

It sounds like you are making the most of everything. I'm happy that you are enjoying your grandchildren so much.

My thoughts are prayers are with you and all here. Many blessings, Mary Ann

deanna14
Posts: 733
Joined: Oct 2008

I whole heartedly agree with Mary Ann!! We are here to support one another for better or worse... so to speak. Please DO NOT censor yourself! You are a very important link in this support system we have going on here and we need you to continue to be real. It's important for us to all face this monster... makes us fight even harder. Crappy cancer monster needs to stop messing with my sisters!!!!

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

Prior to my 10th weekly taxol infusion, I had labs that included a CA-125 blood draw. My CA-125 went UP from 44.6 to 47.1, which isn't a significant increase, but still a move in the wrong direction. The oncologist had already decided to schedule a PET-CT scan for me next Monday before I ever got my CA125 results, based on the fact that today was 10 chemo rounds in, so roughly half of the rounds he expects me to have with this initial recurrence. (He said today that typically taxol chemo for 1st recurrence goes on for 6 months minimum. ARGH! That was news to me.) He said if my CA-125 went up today that he'd wait until the PET/CT scan results were in and we'd probably switch to Doxil or add carbpoplatin to my taxol. Soooo, I don't have to go in for any Nuepopgen shots this week. & Monday instead of chemo, I will be getting a whole-body CT/PET scan.

I am also to see my gynecologic-oncologist for his opinion after the CT/Pet scan. I haven't seen him since November, since I have been under the care of my chemo oncologist. If Doxil is the chosen next chemo, I'll need to have a MUGGA test after the PET/CT to see if my heart is strong enough for the Doxil. I have always had a strong heart. So I won't know anything until after my scan.

So the GOOD NEWS is 'No Nuepogen shots this week' and 'no chemo on Monday' (Because of the scan), so a tiny break for me! I don't need to tell you how HUGE Monday's PET/Ct scan will be! GULP!!

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

Hey Linda, sorry to hear about your number going up a bit I kind of wish you went on Doxil first, but since it was your first recurrence I guess that's what they do. I hate some of the side effects of Doxil but from what my ct scan says my nodules are shrinking and no sign of progression. I have had only four treatments with it. I haven't talked with the Dr. yet about how long I will be on Doxil hopefully this week sometime we will have a chat. I have never been given a MUGGA test. Every time I have a ct scan they see if the heart is in a normal range I will ask the Dr. why I haven't had one. I wish the best with the PET/Ct scan. The waiting game is just so hard and we all know what you are going through.
Hugs from Oregon

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

Linda,

Sending you hugs and positive vibes for a quick turnaround in the other direction for those damn numbers :)

Stay strong!

Laurie

thank you
Posts: 77
Joined: Jun 2009

Linda, I am sure that everybody in this site will be praying for you. We all need to hear that these lymph nodes aren't there any more.

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

Linda,

Sending you well wishes for your Pet Scan tomorrow....

Hang in and keep us posted..

Laurie

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