New conversation on Gemzar and Cisplatin

carol2dogs

Hi, everyone!
Okay, here it is, a new thread on the Gemzar and Cisplatin combo. Only, now it is hard to remember who said which for the last few messages.
Anita, where is your CA125 after your 5 treatments? any guess as to how many more?
Jean and MichaelaMarie, I have not had any real hair loss, either, after 1 1/2 treatments.
That one week off, with both two weeks in a row sounds rough - please keep us posted. My counts would not allow that schedule to take place. Are you getting Neulasta?
Anyway, for whoever wanted to know where we're coming from. I live in eastern, rural North Carolina and am stage 3c. I was first dx in 11/05, 8 rounds of carbo/taxol then NED till 4/08, first recurrence achieved NED 12/08, started back on chemo this June. Personally, I believe that I did not fully achieve remission in '08, and this is still the first recurrence rather than the second. I guess it really doesn't much matter, though, does it? Thanks to all. This is so hugely helpful!!
Love and hugs, Carol

MichaelaMarie

New conversation on Cisplatin and Gemzar
I'm here for the new thread, Carol. It was getting way over to the side like Bonnie said.
Isn't Bonnie's news just the best we've had on the board for awhile? Wow! I, too, was diagnosed with Stage 111C just over 5 years ago. While on Topotecan, I was getting the Neulasta shot, but I have been off chemo for five or six weeks, until this past Wednesday. I'm like you, I don't believe that I was ever in a real remission. It seems that I have pretty much been on chemo all along. They told me that my dose of Cisplatin is fairly low (don't know why), and their objective for me is the 'combination' of the two drugs. I'll try to remember to ask next week. So far, I'm doing pretty good almost 48 hours out. Just a little quesiness and tired from no sleep. I'm feeling a major concern though about the area at the base of my neck. Even two years before my diagnosis, I thought that I noticed puffiness on especially the left side of my neck. Lately, it seems to have gotten quite a bit larger and firm. I have tended to carry my heavy purse on that side, and will often forget even now. It's been a little painful lately, and especially this morning. I did find myself waking up on that side during the night, maybe that's it. I'm guessing that it is probably the cancer, so am wondering if any of you know if they would radiate that area at the same time that I'm getting chemo? By the way, and back to our regimen, do all of you women get two bags of fluids with your treatment, plus being advised to drink 64oz. of water within the next day? They told me that the Cisplatin can damage your kidneys and also cause bladder infections. My blood counts are still low, so no doubt I will probably start getting the shots again too. I live in Oregon, where we have been having record breaking heat lately. It's been up to 107 degrees, but is a bit cooler the last few days. We're really not use to these temperatures, so lots of people have been heading to the ocean, an hour or so away. We don't get a lot of sun during the year which puts we women up here in the Northwest at statistically higher risk for ovarian cancer. But, that doesn't account for you all that live in the southern states, does it? Well, I hope everyone follows us up here on this new thread about the same subject. I think that I will make notes on everyone, how long on this therapy, their symptoms, what works for them, where they are from, their marker numbers (hopefully dropping drastically for everyone), what their doctors have to say, etc. That will surely help me to remember everyone's story when they post, because it does get difficult, especially with my "chemo brain." How many are there of us now that are doing this regimen? I'm still wondering if it is something new for those of us that have been through many different chemotherapys.
Best regards and hugs to all....MM

jamilou

MichaelaMarie said:

New conversation on Cisplatin and Gemzar
I'm here for the new thread, Carol. It was getting way over to the side like Bonnie said.
Isn't Bonnie's news just the best we've had on the board for awhile? Wow! I, too, was diagnosed with Stage 111C just over 5 years ago. While on Topotecan, I was getting the Neulasta shot, but I have been off chemo for five or six weeks, until this past Wednesday. I'm like you, I don't believe that I was ever in a real remission. It seems that I have pretty much been on chemo all along. They told me that my dose of Cisplatin is fairly low (don't know why), and their objective for me is the 'combination' of the two drugs. I'll try to remember to ask next week. So far, I'm doing pretty good almost 48 hours out. Just a little quesiness and tired from no sleep. I'm feeling a major concern though about the area at the base of my neck. Even two years before my diagnosis, I thought that I noticed puffiness on especially the left side of my neck. Lately, it seems to have gotten quite a bit larger and firm. I have tended to carry my heavy purse on that side, and will often forget even now. It's been a little painful lately, and especially this morning. I did find myself waking up on that side during the night, maybe that's it. I'm guessing that it is probably the cancer, so am wondering if any of you know if they would radiate that area at the same time that I'm getting chemo? By the way, and back to our regimen, do all of you women get two bags of fluids with your treatment, plus being advised to drink 64oz. of water within the next day? They told me that the Cisplatin can damage your kidneys and also cause bladder infections. My blood counts are still low, so no doubt I will probably start getting the shots again too. I live in Oregon, where we have been having record breaking heat lately. It's been up to 107 degrees, but is a bit cooler the last few days. We're really not use to these temperatures, so lots of people have been heading to the ocean, an hour or so away. We don't get a lot of sun during the year which puts we women up here in the Northwest at statistically higher risk for ovarian cancer. But, that doesn't account for you all that live in the southern states, does it? Well, I hope everyone follows us up here on this new thread about the same subject. I think that I will make notes on everyone, how long on this therapy, their symptoms, what works for them, where they are from, their marker numbers (hopefully dropping drastically for everyone), what their doctors have to say, etc. That will surely help me to remember everyone's story when they post, because it does get difficult, especially with my "chemo brain." How many are there of us now that are doing this regimen? I'm still wondering if it is something new for those of us that have been through many different chemotherapys.
Best regards and hugs to all....MM

Welcome back
MichaelaMarie
Welcome back! It is good to see you back on the boards. I hope you are able to tolerate the new treatment well enough to get all of your doses. I will be thinking of you!
Jami

jean b

I know it is hard to
I know it is hard to remember everyone's specifics, but just having someone to talk to and compare notes helps. I too would like to find a way to keep it all straight. Oddl enough I am from North Carolina also, Matthews, just outside of Charlotte. What a small world.
Jean

carol2dogs

jean b said:

I know it is hard to
I know it is hard to remember everyone's specifics, but just having someone to talk to and compare notes helps. I too would like to find a way to keep it all straight. Oddl enough I am from North Carolina also, Matthews, just outside of Charlotte. What a small world.
Jean

Small world
Jean,
I most definitely know where Matthews is! I moved here from Winston-Salem, and used to make many trips to Charlotte back when I worked for IBM. My ex-boyfriend even considered moving there, and we made many house-hunting trips to Charlotte. At the time, real-estate prices were actually lower in Charlotte than in Greensboro - have no idea as to why. I bet that is NOT the case now.
I like MichaelaMarie's idea of taking notes - an excellent strategy for chemo brain!
I next get the gemzar only next Thursday.
Take it easy and hve a good weekend.
Love and hugs, Carol

LPack

Gemzar & Cisplatin #2 Thread
I too am taking gemzar & cisplatin as one of you are together everyother week. With a neulasta shot the following day.

I live in St. Clairsville, OH and am sure no one has heard of it?? I was diagnosed in January 2008 with stage 3c. 7 out of 9 rounds of carbo/taxol and then hexalen 2 rounds out of 6. Had low white counts. Was NED sometime late 2008 and then recurrence June of this year.

Have had 2 treatments of gemzar and cisplatin and find this cocktail harder on me then carbo/taxol. Maybe b/c I have it everyother Monday and not once a month.

Also, I have talked with a lady whose son was on cisplatin for bone cancer in his leg and he lost all of his hair. She told me I would lose mine. I already have a wig from before (lost hair by 16th day) and lots of scarves. Did get my "chemo cut" on Thursday just in case.

Sorry so many of us going through same treatment but nice to have each of you to talk to. Had to get neulasta a day later than last time, have not experienced the spasms in lower back yet. Maybe I won't??

In His Grip,
Libby

kayandok

LPack said:

Gemzar & Cisplatin #2 Thread
I too am taking gemzar & cisplatin as one of you are together everyother week. With a neulasta shot the following day.

I live in St. Clairsville, OH and am sure no one has heard of it?? I was diagnosed in January 2008 with stage 3c. 7 out of 9 rounds of carbo/taxol and then hexalen 2 rounds out of 6. Had low white counts. Was NED sometime late 2008 and then recurrence June of this year.

Have had 2 treatments of gemzar and cisplatin and find this cocktail harder on me then carbo/taxol. Maybe b/c I have it everyother Monday and not once a month.

Also, I have talked with a lady whose son was on cisplatin for bone cancer in his leg and he lost all of his hair. She told me I would lose mine. I already have a wig from before (lost hair by 16th day) and lots of scarves. Did get my "chemo cut" on Thursday just in case.

Sorry so many of us going through same treatment but nice to have each of you to talk to. Had to get neulasta a day later than last time, have not experienced the spasms in lower back yet. Maybe I won't??

In His Grip,
Libby

gem/cis
Hi gals, I am back from my chemo/cancer break and feeling refreshed. I have read your thread with interest as I just finished 6 cycles of gem/cis in June. I did 75mg/m2 and 1000 mg/m2 Gemzar (Gemcidabine) on days # 1 and  # 8 with a 21 day cycle. I had anti nausea and steroids in the bottle before and after infusion and for 3 days afterwards with 4 nights in hospital of hydration. In spite of all of the meds, I had severe nausea and throwing up for 3 days. It seemed to lift after that and there wasn't any reaction at all to the gem on day 8.

I had almost no side effects with carb/taxol other than a few days of aches and pains off and on, so the nausea really threw me for a loop, but I am glad I hung in there and did it. I didn't have any blood boosters or infusions and was able to stay on the 21 day schedule the whole time.My hair thinned slowly (I think from the cis) and did shave it off at the very end. It is now growing back.

My CA125 was at 18 last I checked a month of so ago. I will be going in next week for another check.

I wish all of you the very best and pray you have good success and little side effects!!

Hugs,
kathleen

jean b

kayandok said:

gem/cis
Hi gals, I am back from my chemo/cancer break and feeling refreshed. I have read your thread with interest as I just finished 6 cycles of gem/cis in June. I did 75mg/m2 and 1000 mg/m2 Gemzar (Gemcidabine) on days # 1 and  # 8 with a 21 day cycle. I had anti nausea and steroids in the bottle before and after infusion and for 3 days afterwards with 4 nights in hospital of hydration. In spite of all of the meds, I had severe nausea and throwing up for 3 days. It seemed to lift after that and there wasn't any reaction at all to the gem on day 8.

I had almost no side effects with carb/taxol other than a few days of aches and pains off and on, so the nausea really threw me for a loop, but I am glad I hung in there and did it. I didn't have any blood boosters or infusions and was able to stay on the 21 day schedule the whole time.My hair thinned slowly (I think from the cis) and did shave it off at the very end. It is now growing back.

My CA125 was at 18 last I checked a month of so ago. I will be going in next week for another check.

I wish all of you the very best and pray you have good success and little side effects!!

Hugs,
kathleen

Dear Kathleen: I read with
Dear Kathleen: I read with interest your experience with Gemzar and Cisplatin.Seems the nausea dehydration are the biggest side effects with this one. I fared much better with taxol and carbo. Anyway, I begin my second round this Thurs. if bloodwork is ok. I have noticed "thinning" of my hair. Hoped I would not have to wear a wig because of the heat, but I don't think there is any getting around it. Your CA125 count is awesome, let's keep it that way. Thanks for your letter.
Jean

saundra

kayandok said:

gem/cis
Hi gals, I am back from my chemo/cancer break and feeling refreshed. I have read your thread with interest as I just finished 6 cycles of gem/cis in June. I did 75mg/m2 and 1000 mg/m2 Gemzar (Gemcidabine) on days # 1 and  # 8 with a 21 day cycle. I had anti nausea and steroids in the bottle before and after infusion and for 3 days afterwards with 4 nights in hospital of hydration. In spite of all of the meds, I had severe nausea and throwing up for 3 days. It seemed to lift after that and there wasn't any reaction at all to the gem on day 8.

I had almost no side effects with carb/taxol other than a few days of aches and pains off and on, so the nausea really threw me for a loop, but I am glad I hung in there and did it. I didn't have any blood boosters or infusions and was able to stay on the 21 day schedule the whole time.My hair thinned slowly (I think from the cis) and did shave it off at the very end. It is now growing back.

My CA125 was at 18 last I checked a month of so ago. I will be going in next week for another check.

I wish all of you the very best and pray you have good success and little side effects!!

Hugs,
kathleen

Glad to hear from you
Glad to have you back, Kathleen. Sounds like you are doing good. (((Hugs))) Saundra

anitarj

Hi Carol
In response to your question my CA125 is 50. I am getting it tested again tomorrow and hopping for a good size drop. It has been dropping alittle slower the last two treatments and the dr. is concerned my cancer may be becoming resistent to this treatment so off for another CT scan on the 10th, then the dr. will let me know what his plans for me are.
I also live in Oregon, Portland Metro area and have been enjoying (ha ha) the outragious heat here. I am so glad it is finally cooling down a bit.
My hair started thinning about 3 weeks ago, after my 4th full treatment. I am really hoping not to loose it all, alittle thinning I can deal with.
Take care all. Anita

MichaelaMarie

anitarj said:

Hi Carol
In response to your question my CA125 is 50. I am getting it tested again tomorrow and hopping for a good size drop. It has been dropping alittle slower the last two treatments and the dr. is concerned my cancer may be becoming resistent to this treatment so off for another CT scan on the 10th, then the dr. will let me know what his plans for me are.
I also live in Oregon, Portland Metro area and have been enjoying (ha ha) the outragious heat here. I am so glad it is finally cooling down a bit.
My hair started thinning about 3 weeks ago, after my 4th full treatment. I am really hoping not to loose it all, alittle thinning I can deal with.
Take care all. Anita

Cisplatin and Gemzar
Good morning everyone!

This morning I had a small amount of blood in my urine. I sort of freaked! The chemo nurse did tell me last week that the Cisplatin can cause bladder infections, but the cat scan also said that there was a thickening in my bladder, etc. Have any of you had a bladder infection with this protocol? Any bleeding? I do think that I felt a couple of sharp "pangs" in my bladder area last night, like you feel with a bursting blood vessel, not too significant. I'm scheduled for treatment tomorrow. I remember having to have urine drawn before every infusion of Doxil. If your protein/blood was too high, you couldn't have treatment that day. I never had that happen though. Do they check your urine with our regimen? This will only be my second time. I hope some of you might give me some ideas, especially if you have had this happen. Hugs and Luv, MM

kayandok

saundra said:

Glad to hear from you
Glad to have you back, Kathleen. Sounds like you are doing good. (((Hugs))) Saundra

Good to be back!
Thanks Saundra, it is good to be back. I just needed a few weeks away from anything cancer/chemo related. We did a short family trip to a coast town, and finished our kid's camp in the mountains. I'm swimming everyday and feel good. I do have some neuropathy in my feet that won't go away despite L Glutamine and B6 every day. Will take a PET in a few weeks to see where everything is at. For now, I am enjoying every day!!

Take care,
kathleen:)

jean b

MichaelaMarie said:

Cisplatin and Gemzar
Good morning everyone!

This morning I had a small amount of blood in my urine. I sort of freaked! The chemo nurse did tell me last week that the Cisplatin can cause bladder infections, but the cat scan also said that there was a thickening in my bladder, etc. Have any of you had a bladder infection with this protocol? Any bleeding? I do think that I felt a couple of sharp "pangs" in my bladder area last night, like you feel with a bursting blood vessel, not too significant. I'm scheduled for treatment tomorrow. I remember having to have urine drawn before every infusion of Doxil. If your protein/blood was too high, you couldn't have treatment that day. I never had that happen though. Do they check your urine with our regimen? This will only be my second time. I hope some of you might give me some ideas, especially if you have had this happen. Hugs and Luv, MM

Good news and bad news.
Had my bloodwork yesterday in preparation for Chemo #2 of Gemzar and Cisplatin. White cell count was a little low, but not dangerously low. They will recheck it tomorrow before my treatment. Dr. said it usually comes back pretty quickly. But the good news is that my CA125 went from 121 to 43 in one treatment. Iam so excited and now all the blahs have made it worth it.
Jean

ggggsister

kayandok said:

Good to be back!
Thanks Saundra, it is good to be back. I just needed a few weeks away from anything cancer/chemo related. We did a short family trip to a coast town, and finished our kid's camp in the mountains. I'm swimming everyday and feel good. I do have some neuropathy in my feet that won't go away despite L Glutamine and B6 every day. Will take a PET in a few weeks to see where everything is at. For now, I am enjoying every day!!

Take care,
kathleen:)

more on the gemzar/cisplatin combo
All this is very confusing. Has anyone ever had a reaction to the cisplatin? My sister has this combo now and just Thursday, 30-40 minutes into treatment, had a severe reaction, with tongue swelling. The docs ultimately had to give her oxygen. After a short time, she felt fine. She thinks her doctor will probably stop the cisplatin. She had carboplatin/taxol the firt time around in 2008. I'm hoping there are other combinations that are effective...or that there's something she can do to combat the bad reaction. Anyone have any ideas?

carol2dogs

MichaelaMarie said:

Cisplatin and Gemzar
Good morning everyone!

This morning I had a small amount of blood in my urine. I sort of freaked! The chemo nurse did tell me last week that the Cisplatin can cause bladder infections, but the cat scan also said that there was a thickening in my bladder, etc. Have any of you had a bladder infection with this protocol? Any bleeding? I do think that I felt a couple of sharp "pangs" in my bladder area last night, like you feel with a bursting blood vessel, not too significant. I'm scheduled for treatment tomorrow. I remember having to have urine drawn before every infusion of Doxil. If your protein/blood was too high, you couldn't have treatment that day. I never had that happen though. Do they check your urine with our regimen? This will only be my second time. I hope some of you might give me some ideas, especially if you have had this happen. Hugs and Luv, MM

Pre-tests
MM,
I have not had my urine checked with this combo. I have also not had any bladder infections. I did have some cancer on the outside bladder wall, but it doesn't seem to have done anything other than squeeze my bladder a little/decrease its capacity.
Sorry i couldn't be more help.
Love and hugs, Carol. PS I go for my "short" gemzar only treatment tomorrow.

carol2dogs

jean b said:

Good news and bad news.
Had my bloodwork yesterday in preparation for Chemo #2 of Gemzar and Cisplatin. White cell count was a little low, but not dangerously low. They will recheck it tomorrow before my treatment. Dr. said it usually comes back pretty quickly. But the good news is that my CA125 went from 121 to 43 in one treatment. Iam so excited and now all the blahs have made it worth it.
Jean

Wow! Congrats!
Jean,
That is some awesome drop in your CA125! Wonderful!
love and hugs, Carol

jean b

Tell me about Neulasta
Hi Carol: Went in for my 2nd round of Gemzar Cisplatin this AM> White cell count was only 1100 on Tues. and down to 900 this AM so my treatment was cancelled til next Thurs. The nurse told me they would be startin Neulasta shots next week so this would not happen again.
I'm a little bummed out after getting psyched up to have another treatment, but I guess it's ok. Did you have any side effects from the Neulasta.
Hugs
Jean

carol2dogs

jean b said:

Tell me about Neulasta
Hi Carol: Went in for my 2nd round of Gemzar Cisplatin this AM> White cell count was only 1100 on Tues. and down to 900 this AM so my treatment was cancelled til next Thurs. The nurse told me they would be startin Neulasta shots next week so this would not happen again.
I'm a little bummed out after getting psyched up to have another treatment, but I guess it's ok. Did you have any side effects from the Neulasta.
Hugs
Jean

Okay with it
Jean,
Unlike most of the other people who have posted on this subject, i didn't have any major problems with Neulasta. I only took it about 3 times, though. I do remember that it burned for about 60-90 seconds after they injected it. If I had any bone pain, I just took Tylenol or Advil. It is horribly expensive - that is the biggest drawback. However, it seems to work really well for everyone, and it is important to try to stay on schedule with your chemo. I had a week's delay trying to get my first day 8 dose of gemzar, and I felt like such a failure. My doc chose to increase the # of days between the day 1 and day8 doses in an attempt to avoid the Neulasta. So far, so good - my bloodwork was fine today for my third gemzar only treatment (day 15). I still get my next treatment of both gemzar/cisplatin on day 28 (hopefully).
Sorry you have to wait a week, but it's definitely not anything you could help. Good luck with the Neulasta - it sounds like the best choice for your situation.
Love and hugs, Carol

jean b

Thank you for the info
Thank you for the info Carol, it helps to know a little from patients rather than nurses or doctors. I felt like a failure too, only the second treatment and already had to reschedule. I pray the counts will be up next Thurs. I don't think they could possibly go down any more. Sounds like your doc has your regime figured out, thank goodness. Best of luck on your next treatment.
Jean

LPack

jean b said:

Thank you for the info
Thank you for the info Carol, it helps to know a little from patients rather than nurses or doctors. I felt like a failure too, only the second treatment and already had to reschedule. I pray the counts will be up next Thurs. I don't think they could possibly go down any more. Sounds like your doc has your regime figured out, thank goodness. Best of luck on your next treatment.
Jean

shot
Jean,

I go for my second round of gem/cis this Monday. The neulasta shot has my white count up to 17! But now my platelets are low and will get my counts redone tomorrow to make sure I don't have to have the chemo reduced.

But the best news is my CA125 went from 193 to 99.8 after one cycle.

Praise the Lord the chemo is working. And the soft tissue (mass?) in left side is getting smaller. Or whatever it is.

In His Grip,
Libby

jean b

LPack said:

shot
Jean,

I go for my second round of gem/cis this Monday. The neulasta shot has my white count up to 17! But now my platelets are low and will get my counts redone tomorrow to make sure I don't have to have the chemo reduced.

But the best news is my CA125 went from 193 to 99.8 after one cycle.

Praise the Lord the chemo is working. And the soft tissue (mass?) in left side is getting smaller. Or whatever it is.

In His Grip,
Libby

Hi Libby: You will be just
Hi Libby: You will be just ahead of me as I go back on Thurs. So happy to hear the CA125 is going down. Isn't it amazing how our lives have changed to "looking at numbers"? Good luck on Monday and I will be praying for you and all my friends on this site.
Jean