Looking for my Gemzar Cisplatin Buddies

jean b

Was in touch with Saundra, Libby, Bonnie Carol, Michaela Marie, and many others as we were all on the same regiment about the same time. Have kind of lost touch over the last few weeks as I have been feeeling lousy. Had Carboplatin and Taxol before and breezed through those. This chemo is brutal on the stomach. Anyway, it seems to be working as my CA 125 started out at 121 and is down to 21 after 2 treatments. (Not to mention all the crap in between.) Wondered how all of you are doing. Please write back.
Love and prayers to all of you.
Jean

anitarj

I have also been feeling
I have also been feeling lousy and not in touch on the discussion board. My CA125 is down to 35 from 550 when I started in April. Dr. say I can be done on Oct. 1st but may have to consider maintenance chemo once a month for a year...UGH!!!!!!!!! The thing I do not understand is that he says it will not extend my 'longevity' but it will keep a recurence from happening sooner. Has anyoone else here had their dr. look them in the eye and say they probably only have 5 years left and how did you work with that knowledge? I know he is only talking numbers as he sees and there are many more factors than just the numbers.

saundra

Not gemzar
I am on Doxil and carboplatin....rather I had one dose. The second was cancelled last Thurs. because I just have not bounced back. I had an echocardiogram instead to look for heart damage. I am scheduled for appt with the gyn/onc next Wed., the oncologist on Thur. and possible chemo. I was told by the oncologist that now we were in the active treatment as a chronic disease and would not be trying to totally rid my body of cancer but keep in at bay with the least damage possible. My CA125 went from 434 to 288 with the first dose. I will know more next week, hopefully. My blood counts were high enough to get chemo but not great as they were after the many doses of Taxol and Carbo in 2007. Love and prayers back to you, Saundra

kayandok

gem/cis
Hi Jean, I wasn't in the group that all started the gem/cis together. But, I did do 6 cycles that finished in June. It was brutal, and I was hospitalized for 5 days every 21 days. I threw up constantly for 4 days didn't eat for a week each time. None of the nausea pills/drips worked for me. I tried several along with a couple different steroids. My blood work came back every 21 days and it did bring the CA125 down to 18. I was able to take the summer off which was so good for my body, mind and spirit.

My CA started to double up immediately and now I start Doxil tomorrow.

Your drop to 21 after two cycle is an awesome drop! I pray for more diving and strength to make it through a few more cycles. Hang in there Jean!

Warm hugs,
Kathleen:)

MichaelaMarie

kayandok said:

gem/cis
Hi Jean, I wasn't in the group that all started the gem/cis together. But, I did do 6 cycles that finished in June. It was brutal, and I was hospitalized for 5 days every 21 days. I threw up constantly for 4 days didn't eat for a week each time. None of the nausea pills/drips worked for me. I tried several along with a couple different steroids. My blood work came back every 21 days and it did bring the CA125 down to 18. I was able to take the summer off which was so good for my body, mind and spirit.

My CA started to double up immediately and now I start Doxil tomorrow.

Your drop to 21 after two cycle is an awesome drop! I pray for more diving and strength to make it through a few more cycles. Hang in there Jean!

Warm hugs,
Kathleen:)

Gemzar/Cisplatin group
Hi Jean,

I was just thinking the same thing.....that I needed to do a "shout out" to our group. It sounds like none of us are feeling that great! My treatment was cancelled a few weeks ago because my counts were unbelievably low. It's really a disappointment when you are there and have your mind set only to get sent home. I guess that my marker is no longer a good gauge for telling how I am responding to treatment. It was going down when I was on Topotecan, but my cat scan showed more growth than before. So, I will have another cat scan at the end of the month. I have a hard lump at the base of my neck and it has not went down at all, so that is a big worry to me. It seems like it must be tumor.

Boy, Kathleen, you really had a rough time with our regimen! How are your blood counts now? Did you ever have to miss a treatment because of low counts like some of us now have?

I'm so glad that "us girls" are regrouping again. All of your experiences and advice have helped me so much. I am always concerned about how everyone is doing, not just those of us on this particular combination.

And, Saundra, I sure hope that your counts allow you to get treatment Wednesday. That's the day I will find out if I get chemo too! Here's hoping everyone feels better and gets to have their treatment on schedule!!!!! Hugs and prayers, MM

kayandok

MichaelaMarie said:

Gemzar/Cisplatin group
Hi Jean,

I was just thinking the same thing.....that I needed to do a "shout out" to our group. It sounds like none of us are feeling that great! My treatment was cancelled a few weeks ago because my counts were unbelievably low. It's really a disappointment when you are there and have your mind set only to get sent home. I guess that my marker is no longer a good gauge for telling how I am responding to treatment. It was going down when I was on Topotecan, but my cat scan showed more growth than before. So, I will have another cat scan at the end of the month. I have a hard lump at the base of my neck and it has not went down at all, so that is a big worry to me. It seems like it must be tumor.

Boy, Kathleen, you really had a rough time with our regimen! How are your blood counts now? Did you ever have to miss a treatment because of low counts like some of us now have?

I'm so glad that "us girls" are regrouping again. All of your experiences and advice have helped me so much. I am always concerned about how everyone is doing, not just those of us on this particular combination.

And, Saundra, I sure hope that your counts allow you to get treatment Wednesday. That's the day I will find out if I get chemo too! Here's hoping everyone feels better and gets to have their treatment on schedule!!!!! Hugs and prayers, MM

cis/gem
MM, sorry to hear that you are having such rough time with your blood counts. My doc claims that the gem/cis is one of the harshest combos. It hit me hard too, but for some odd reason, my blood counts were ok, and I didn't miss any treatments. I didn't get any blood boosters or transfusions.

I hope your blood comes back and you can get your chemo soon!!

Hugs,
kathleen

LPack

good morning
Jean,

You are right, this one is harder than carbo/taxol for me anyways. I have not been on board much either. I am tired, my stomach hurts some, my legs look bad (veins), platelets are too low for chemo when I had the blood work, but had CBC yesterday before church to see if I can have my #3a treatment tomorrow (still been on schedule so far). If still lower she will reduce dose, but I will still have it.

Neulasta works for the white count and now after the b portion of treatment I am to have Neumega to boost my platelets for 4 days of shots. Of course insurance will have to give the okay. I am sure they know who I am now! ☺

Your CA 125 dropped very well. Mine started at 199 and down to 36.3 after 2 full treatments. Constipation has been manageable. All in all, I cannot complain. Just very tired week of chemo and then try to make up for it next week!!

Love to all you gem/cis women and everyone else. It would be so cool to have a central meeting place where some of us could meet!

In His Grip,
Libby

carol2dogs

Thanks, Jean
Jean,
Thanks for the reminder of staying in touch with our gem/cis buddies. I am now back in school, teaching, and have not been responding as much on the board. My work days are generally around 10 hours, so I'm very tired when I get home.
I just had the 3b treatment last Thursday, and did fine. Taking the gemzar alone makes me tired, but little else. I take the laxatives at every chemo so couldn't really tell you if the gemzar alone brings less constipation. My next full blast will be 9/17. I too have found that this combo is harder on me than the carbo/taxol, and the effects seem to start right away, rather than giving that 72 hour "grace" period. For my last full blast, I took extra doses of Zofran and a small dose of steroid, and that seemed to help with the nausea.
My doc only takes my CA125 when i have both chemos, so I only get that once monthly. My last one was 39, down from 93, so i was very pleased. I am hoping that this time I can get remission with 6 or fewer chemos/pairs of chemos!
Kathleen, I'm so sorry that this combo was so rough on you!
Best of luck to all of us on our journeys!
Love and hugs, Carol

LPack

kayandok said:

cis/gem
MM, sorry to hear that you are having such rough time with your blood counts. My doc claims that the gem/cis is one of the harshest combos. It hit me hard too, but for some odd reason, my blood counts were ok, and I didn't miss any treatments. I didn't get any blood boosters or transfusions.

I hope your blood comes back and you can get your chemo soon!!

Hugs,
kathleen

wonderful
Kathleen,

How great that your blood counts were okay. My bone marrow is "sensitive". Actually just called and my platelets are still too low for the dose she has me on for tomorrow. But believe that it will just be reduced. Don't know if both gemzar and cisplatin will be or one or the other.

Have a great Labor Day.

Libby

MichaelaMarie

carol2dogs said:

Thanks, Jean
Jean,
Thanks for the reminder of staying in touch with our gem/cis buddies. I am now back in school, teaching, and have not been responding as much on the board. My work days are generally around 10 hours, so I'm very tired when I get home.
I just had the 3b treatment last Thursday, and did fine. Taking the gemzar alone makes me tired, but little else. I take the laxatives at every chemo so couldn't really tell you if the gemzar alone brings less constipation. My next full blast will be 9/17. I too have found that this combo is harder on me than the carbo/taxol, and the effects seem to start right away, rather than giving that 72 hour "grace" period. For my last full blast, I took extra doses of Zofran and a small dose of steroid, and that seemed to help with the nausea.
My doc only takes my CA125 when i have both chemos, so I only get that once monthly. My last one was 39, down from 93, so i was very pleased. I am hoping that this time I can get remission with 6 or fewer chemos/pairs of chemos!
Kathleen, I'm so sorry that this combo was so rough on you!
Best of luck to all of us on our journeys!
Love and hugs, Carol

Anitarj
Hello Anita,

Your question about anyone else having a doctor look you in the eye and tell you that you only have five years left, reminded me of something that was said to me about 5 years ago. My own gyn/onco was on vacation, so I saw her partner. As I was getting ready to leave after the exam, she said: "Just so you know: No one survives this disease. A 5 year survival is on the upper end." I was so shocked I don't think I even responded to her. I often wonder why she felt the need to make that comment especially since she wasn't even my own doctor.

By the way, I wanted to ask all of you Cis/Gem girls if you have had the regimen that my doctor mentioned a few weeks ago. My treatment had to be cancelled because of my low counts, as I have already mentioned, but he told the nurse to tell me that he was probably going to do both the Cis and Gem at the same time every other week so that my blood counts would have two weeks to recover after each treatment. Anyone doing that? Heard of it?

Thanks, Bonnie, for the info on the hernias. I believe that you have mentioned that before, but with this "chemo brain" I guess I had forgotten. It certainly makes sense. How are you doing these days? Up for chemo this week?

Take good care everyone!!! Hugs, MM

jean b

MichaelaMarie said:

Anitarj
Hello Anita,

Your question about anyone else having a doctor look you in the eye and tell you that you only have five years left, reminded me of something that was said to me about 5 years ago. My own gyn/onco was on vacation, so I saw her partner. As I was getting ready to leave after the exam, she said: "Just so you know: No one survives this disease. A 5 year survival is on the upper end." I was so shocked I don't think I even responded to her. I often wonder why she felt the need to make that comment especially since she wasn't even my own doctor.

By the way, I wanted to ask all of you Cis/Gem girls if you have had the regimen that my doctor mentioned a few weeks ago. My treatment had to be cancelled because of my low counts, as I have already mentioned, but he told the nurse to tell me that he was probably going to do both the Cis and Gem at the same time every other week so that my blood counts would have two weeks to recover after each treatment. Anyone doing that? Heard of it?

Thanks, Bonnie, for the info on the hernias. I believe that you have mentioned that before, but with this "chemo brain" I guess I had forgotten. It certainly makes sense. How are you doing these days? Up for chemo this week?

Take good care everyone!!! Hugs, MM

Thanks for replying.
Hi Everyone: Thanks for your wonderful notes. I have just completed round 3 of 6 gem/cis. I cannot believe how nauseated I am. I have taken everything possible and still have nausea, sour taste in mouth, burning in the pit of my stomach, etc. I am trying to be positive, but each day seems to bring another problem. Not too many good days along the way. All of your comments have helped me somewhat. You know the saying, Misery loves company, it just makes me feel better that I am not going through all this alone. Guess we have all been giving the site a break as we try to heal. Much love and prayers to all of you and thanks.
Jean

LPack

jean b said:

Thanks for replying.
Hi Everyone: Thanks for your wonderful notes. I have just completed round 3 of 6 gem/cis. I cannot believe how nauseated I am. I have taken everything possible and still have nausea, sour taste in mouth, burning in the pit of my stomach, etc. I am trying to be positive, but each day seems to bring another problem. Not too many good days along the way. All of your comments have helped me somewhat. You know the saying, Misery loves company, it just makes me feel better that I am not going through all this alone. Guess we have all been giving the site a break as we try to heal. Much love and prayers to all of you and thanks.
Jean

Your Welcome
Jean,

Good to be updated with everyone. I did go for chemo this morning and it was canceled. Platelets are still too low. So will try again Monday.

I have been approved for Neumega for the low platelets. Now I will be having shots after chemo for both white counts and platelets. What we go through so we can have toxic chemicals!

I do believe this has been the hardest regime so far. And I hope and pray it will be the last for all of us. I still have rounds 3-7 to complete!!

Take care! ♥

In His Grip,
Libby

Unknown

This comment has been removed by the Moderator