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Topic: Anyone on Gemzar?

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  • Posted on: Jun 23, 2009 05:12 pm
NY
Joined: Jan 2009
Posts: 341
Nanalinda wrote:

My new scan shows progression.  I have had disease in supraclavicular lymph nodes, mediastinum and spine.  Now I have involvement in the lymph nodes around my trachea and 2 spots in my lung.  I was on Taxol/Avastin which stopped working at 10 months.  My oncologist is starting me on Gemzar this Friday.  Has anyone been on this drug?  If so, can you tell me how well it worked and what side effects did you have?  I know the drugs work differently on everyone, but I am curious.  I thought I was going to start Xeloda, but she decided to go with the Gemzar instead, and I have not heard very much about this drug.  It's been kind of a down day for me even though I was expecting to hear that the 1st chemo had stopped working because I could feel the supraclavicular nodes growing.  I hope this new drug works a bit longer.  My DH  who was with me at the Dr. office took the news very hard, but we both agreed after we returned home that we have only just begun to fight.  Linda 


Dx 7/26/2006, IDC, 3cm, Stage IV, Grade 3, 0/0 nodes, mets, ER-/PR-, HER2-

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Nanalinda
NY
Joined: Jan 2009
Posts: 341
Jul 9, 2009 12:32 pm Nanalinda wrote:

Well, today should have been tx #3 for me, but counts were too low and they turned me away.  Actually they were very low...  WBC 1.3, PLT 36.  I go back on Monday to recheck bloodwork, and they scheduled me for next Thurs. for my next tx.  Onc. wants to wait on the Neulesta for now.  I am feeling really wiped out (H&H are down a bit too).

Bonnielv:  Hope the Neupogin works for you, and hope this tx kicks butt for you too.


Dx 7/26/2006, IDC, 3cm, Stage IV, Grade 3, 0/1 nodes, mets, ER-/PR-, HER2-
Bonnielv
NV
Joined: Oct 2007
Posts: 293
Jul 14, 2009 06:57 pm Bonnielv wrote:

Went for tx#3 today and was sent away.  WBC was acceptable for tx but PLT were low.  Will try again next Tuesday.  Just wondering if this tx is going to be a constant ping pong game of not knowing when tx will happen.  Anyone have better success than Nanalinda and I?

Orig dx IDC Stage 0/10 nodes
Dx 9/2007, , Stage IV, 0/10 nodes, ER+/PR+, HER2-
Lifestoosho…
WI
Joined: Nov 2008
Posts: 70
Jul 14, 2009 07:27 pm, edited Jul 14, 2009 07:28 PM by Lifestooshort Lifestooshort wrote:

Hi Linda and Bonnie,

I did 3 cycles of Gemzar/Cisplatin.  1 week it was both, 2nd week was Gemzar, 3rd week off... for 3 cycles.  Does this make sense?  I always got the Neulasta shot.... didn't get a choice on that one.  But I was very, very tired with lead/cement legs. I did end up getting on Arnasp shot (but I don't think they do that anymore) for red blood cells probably after the 2nd treatment and was close to a platelet transfusion for last cycle but he let me do the treatment without.  Gemzar is supposed to be a pretty good chemo... so hang in there.... you have a cheerleader here for you two! 

As always, best wishes.

Laurie
Dx 6/6/2006, IDC, 2cm, Stage IV, Grade 3, 1/22 nodes, mets, ER-/PR-, HER2-
Nanalinda
NY
Joined: Jan 2009
Posts: 341
Jul 14, 2009 10:51 pm Nanalinda wrote:

This Gemzar must be pretty powerful stuff.  I have never before had blood counts too low for chemo.... back in 2006 with my original dx, I had 6 rounds of TAC, and recently 10 months of Taxol/Avastin.... but my counts always bounced back in time for the next scheduled tx.  I have read that some people end up doing 2 wks on and 1 week off rather than the 3/1 schedule.  I wonder if that is what we will end up doing.... just so long as it is enough to beat the cancer down. 

Lifestooshort:  Are you no longer on Gemzar/Cisplatin?  Thank you for the good wishes.

Bonnielv:  Good luck.  Hope your PLT count comes back up for next Tues.


Dx 7/26/2006, IDC, 3cm, Stage IV, Grade 3, 0/1 nodes, mets, ER-/PR-, HER2-
KLynn
Joined: Jan 2007
Posts: 1,389
Jul 14, 2009 11:12 pm KLynn wrote:

Hey Linda, I'm glad to hear you aren't have too much trouble with the Gemzar...Yes my counts kept diving too, but they will give you shots for that and they will really help..I think I only missed one treatment the whole time because of counts...It is strong, but it means that it is kicking butt.....and kicking cancer.....sorry you are tired, I was also very tired, but I guess I got use to it, and once I stopped I realized how much better I felt...Good luck and know that we are thinking  about you.....Big Hugs KLynn....hang in there sweetie....you can do it....

How lucky I was to have known someone, that was so hard to say goodbye to....
Dx , Stage IV, 6/17 nodes, ER+/PR+, HER2+
Nanalinda
NY
Joined: Jan 2009
Posts: 341
Jul 14, 2009 11:49 pm Nanalinda wrote: KLynn:  Thank you for the words of encouragement.... and the hugs.  Laughing  You put a smile on my face!  Linda

Dx 7/26/2006, IDC, 3cm, Stage IV, Grade 3, 0/1 nodes, mets, ER-/PR-, HER2-
marieibrahi…
Joined: Jul 2009
Posts: 7
Jul 15, 2009 09:05 am marieibrahim wrote:

dear nanalinda

my mother was on gemzar ,she also progressed after first line chemo,the drug worked well and i think  it s a very tolerable drug with few side effects.cheer up

Lifestoosho…
WI
Joined: Nov 2008
Posts: 70
Jul 15, 2009 08:44 pm Lifestooshort wrote:

NanaLinda,

I did 2x AC  neoadjuvant - my tumor didn't respond - it grew.  So then surgery, 1 x Taxotere (bad SE so he wouldn't let me continue that) and finished up with 3 cycles of gemzar/cisplatin (so really 6 treatments of gemzar).  1 tiny lung met, found incidentally  6/08 and was removed and so far so good... just had a good PET scan about a week ago.

I think Gemzar is a really good cocktail! You may feel miserable now, but think of it as having to do this to get that cancer miserable too so it just picks up, packs its bags and leaves....for good!

Hang in there! 

Laurie
Dx 6/6/2006, IDC, 2cm, Stage IV, Grade 3, 1/22 nodes, ER-/PR-, HER2-
Nanalinda
NY
Joined: Jan 2009
Posts: 341
Jul 16, 2009 12:28 pm, edited Jul 20, 2009 05:06 PM by Nanalinda Nanalinda wrote:

mariebrahim:  Glad to hear your mom had good results.

Lifestooshort:  Congratulations on your good PET scan.  I would be glad to give cancer a going away party.  In fact, I know Gemzar is already working - the tumor in my neck is shrinking; I can barely feel it anymore.

I had tx #3 today!  PLTS came back up to 300.  WBC is still 1.3 (the cut off is 1.5) but they let me go ahead with treatment.  I will be starting Neupogen tomorrow.

Good luck to all of you on your upcoming treatments.


Dx 7/26/2006, IDC, 3cm, Stage IV, Grade 3, 0/1 nodes, mets, ER-/PR-, HER2-
konakat
Ottawa, ON
Joined: Jun 2007
Posts: 1,613
Jul 20, 2009 03:33 pm konakat wrote:

I got the results from my MRI (been on Gemzar since May).  The results aren't great, but aren't bad -- shall we say inconclusive??? -- one lesion is about the same size (1.6 cm) and another smaller.  My onc wants me to continue on one more cycle of G and then get another PET/CT Aug 10 and compare it with my previous ones before we decide to keep on with Gemzar or try something else.  Grrrrrrrr.  I'm really hoping the next PET is good.

At least I don't have any bad SEs, other than the usual platelets, WBC...

I told my onc that there are quite a few of us relying on Gemzar, that it's had good reviews.  So, let's keep our fingers crossed that I'm just an oddball if it isn't working.  I'm happy for everyone that is doing well so far!!!!!  Yea!!!!!!

Elizabeth's Mantra: When in doubt, eat cake.
Dx 5/2007, ILC, 3cm, Stage IV, Grade 3, 13/19 nodes, mets, ER+/PR+, HER2+
KLynn
Joined: Jan 2007
Posts: 1,389
Jul 20, 2009 03:50 pm KLynn wrote:

Konakat..

If you are having some change, even a little bit at this point on the good side I would stay with it...I was on Gemzar for a year....I know it seems long, but if it is working and you have little s/e's I think you should try not to switch off too soon..May isn't really that long ago, and for some reason the Gemzar doesn't show fast results...If you keep switching you won't really know which is working and which isn't..This way when you go into remission, and some day (way down the line) you have to do chemo again, you will know what worked...I'm thinking if I have to go back to chemo , I at least have the gemzar as first shot...it worked once why not again..Right  ??? Don't give up on it too soon and have them rule that out as a drug for you..JMHO.....It makes me happy too to see you all doing so well on it..

I know I will be on herceptin for life so I guess the year of gemzar didn't seem that long..lol strange how things have a different perspective....I remember thinking how I'm I going to fit in a full month of rads in the beginning..lol, and when I was put in the herceptin trial with my orig. dx, I was put into the yr long treatment plan instead of the 6 months half....I thought there is no way I'll make a yr of this drug...who know huh ???? oh well one day at a time now....Good luck and I wish you well on Gemzar..hang in there..Hugs KLynn....

How lucky I was to have known someone, that was so hard to say goodbye to....
Dx , Stage IV, 6/17 nodes, ER+/PR+, HER2+
Nanalinda
NY
Joined: Jan 2009
Posts: 341
Jul 20, 2009 05:13 pm Nanalinda wrote:

konakat:  I hope your next PET is very good too.  Hang in there.  I agree with KLynn that it is still early to tell how well the Gemzar is working.. the PET will show a better picture for you.  Best of luck.

I had my first 3 doses of Neupogen this weekend, and talk about achey!!!!  My hips, legs and arms are throbbing like a bad tooth ache.  I hope this gets better with time.

Best of luck to all you Gemzar girls!   Linda


Dx 7/26/2006, IDC, 3cm, Stage IV, Grade 3, 0/1 nodes, mets, ER-/PR-, HER2-
PJB
Joined: May 2004
Posts: 2,639
Jul 20, 2009 05:22 pm PJB wrote:

Ooh, I hated Neupogen. It just makes you feel so miserable! I've managed to avoid it so far. Had 4th Gemzar/Cisplatin on Friday.

Konakat, I think a little shrinkage is good. I'm completely with you, though, on the let-down feeling. I really went into my scan after Taxol/Avastin expecting shrinkage, and there was none. 

 I'm hoping for SOME good news out of my scan Thursday. 

 Hugs all,

Paula 

konakat
Ottawa, ON
Joined: Jun 2007
Posts: 1,613
Jul 20, 2009 10:13 pm konakat wrote:

Thanks for the advice!  I don't want to run out of drugs!!

Here's some details....I've had so many scans I've bolded them for clarity.  :-)

I was comparing last week's MRI lesion sizes to a March CT scan.  When I had a PET/CT in May they couldn't see the lesions on the CT part, just the glowing blobs on the PET part.  Now they're visible.  So I'm wondering -- is the CT scan of a PET/CT as good as a regular CT scan or does it only get the general anatomical outline to lay the PET scan on top.  Maybe the lesions were always there...

AND, I'm wondering if I was taken of taxol too soon.  I was looking at my PETS from Nov, March, and May.  The radiologist only compared the May PET with the Nov PET and it looked like I was getting worse.  The decision to stop taxol and start gemzar was based on this analysis.  HOWEVER, if he compared the May PET with the March PET, it looked like I was improving.  I just noticed all this -- gotta point it out to my onc. Seems to me that the radiologist dropped the ball on this analysis... I was improving over time, not great, but improving.  Not that I want to go back on taxol...

Oh well, I'm blathering on...I still hope Gemzar will kick some cancer butt!!

I don't think I'll know what's what until August.  My onc wants to compare uptakes on the various PETs to get a clearer picture.  I'll have to make sure that all the PETs are considered.

Elizabeth's Mantra: When in doubt, eat cake.
Dx 5/2007, ILC, 3cm, Stage IV, Grade 3, 13/19 nodes, mets, ER+/PR+, HER2+
Bonnielv
NV
Joined: Oct 2007
Posts: 293
Jul 22, 2009 03:32 pm Bonnielv wrote:

Scheduled for 3rd Gemzar after missing last week due to low platelets. Met with onc and have a new tx plan.  Will do Gemzar at a reduced dosage for 2 weeks on and 1 week off. After each 2nd tx will have neulasta shot. Oh by the way, wbc were borderline for tx but I was able to still have it.

Orig dx IDC Stage 0/10 nodes
Dx 9/2007, , Stage IV, 0/10 nodes, ER+/PR+, HER2-
wickedfran
Willoughby, oh
Joined: Apr 2004
Posts: 58
Jul 22, 2009 03:57 pm wickedfran wrote:

Bonnielv, When did you start Gemzar? I had my 1st treatment yesterday (Gemzar/Avastin) and I will get 3 weeks on with one week off. I am very tired today and feel a bit crappy but not really too bad. What was your initial treatment cycle set up as? I'm just curious if you just started Gemzar 3 weeks ago or what? Thanks for your info!

Share what you know today and learn something new tomorrow.
Nanalinda
NY
Joined: Jan 2009
Posts: 341
Jul 23, 2009 05:53 pm Nanalinda wrote:

Well had tx #4 today.  My WBC and PLT were OK (Neupogen did the job!).  They said my liver enzymes tripled since last week and ask if I was on any cholesterol meds or any new meds.  I have been on lipitor for a number of years, and recently started CoQ10; they told me to stop both meds to see if the liver enzymes go back down.  Maybe it is the CoQ10... have any of you had a problem with it?  I'll have to look up the Neupogen also to see what se's it causes.  It just never ends doesn't it?

PJB:  Good luck on your upcoming scan.

Konakat:  I hope they get your scans straightened out.  It does sound like the radiologist dropped the ball on reading yours.  I hope Gemzar kicks butt for you, and if it works well, you can save the Taxol to try again at a later date.

Bonnielv:  I hope the 2/1 schedule works for you, it seems it would be much easier on the body.  Do you get the same aches from Neulesta as you get from Neupogen?

Wickedfran:  Good luck on your Gemzar treatments.  Keep us up to date on how you are doing.


Dx 7/26/2006, IDC, 3cm, Stage IV, Grade 3, 0/1 nodes, mets, ER-/PR-, HER2-
Lifestoosho…
WI
Joined: Nov 2008
Posts: 70
Jul 23, 2009 06:50 pm Lifestooshort wrote:

NanLinda,

When I did my Gemzar/Cisplatin cocktail after the 6th (and finale) one, my liver enzymes had gone up too.  Not tripled, but enough that they made me go back for a couple more blood tests to make sure it came back down.  At that time I was not on any cholesterol meds (or supplements).  I think Gemzar is strong enough to take out the cancer, but unfortunately gives the liver (and kidneys) a little beating too.  My bet is that your liver enzymes will come back down!!!

Hang in there gemzar ladies!!!!

Laurie
Dx 6/6/2006, IDC, 2cm, Stage IV, Grade 3, 1/22 nodes, ER-/PR-, HER2-
Nanalinda
NY
Joined: Jan 2009
Posts: 341
Jul 23, 2009 09:13 pm Nanalinda wrote:

Thanks Laurie:  I forgot the Gemzar could do it.  My enzymes went up when I was on Taxol, but came back down once the dose was lowered.  Thanks for the reminder.  Linda


Dx 7/26/2006, IDC, 3cm, Stage IV, Grade 3, 0/1 nodes, mets, ER-/PR-, HER2-
konakat
Ottawa, ON
Joined: Jun 2007
Posts: 1,613
Jul 24, 2009 01:58 pm konakat wrote:

Well, I feel a lot better!  I spoke to my nurse and onc today about my PETs.  My onc assured me that she reviewed everything (all the PETS, CTs...) and with the bad neuropathy (falling down), and being on taxol for so long without great results that these were the reasons for ending taxol and starting gemzar.

So I can sleep at night now, knowing that the poor PET analysis didn't play into my chemo change.  I was so scared that my onc had bad info.  So, I'm happily on Gemzar, looking forward to my Aug PET.  Even though I'm tired, achy, and have wacky platelets I feel pretty good.  I hope to have good news to share in August.

Thanks ladies!

Elizabeth

Elizabeth's Mantra: When in doubt, eat cake.
Dx 5/2007, ILC, 3cm, Stage IV, Grade 3, 13/19 nodes, mets, ER+/PR+, HER2+
Nanalinda
NY
Joined: Jan 2009
Posts: 341
Jul 31, 2009 09:58 am Nanalinda wrote:

Well, it looks like I am not going to be able to have Gemzar 3 weeks on/one week off.  I just can't seem to get the 3rd week dose in.  Yesterday, my PLTS were only 32, so they had to hold the dose.  WBC was OK, liver enzymes were still up but improving.  They scheduled me to come back next week.  The good news is that it is working!  The tumor's in my neck are no longer palpable at all!  How is everyone else doing?  I am very tired.  My husband and I played golf yesterday afternoon and I could barely make it through 9 holes.... I felt like I was going to just drop.  Golf is the one thing we love to do together and I would hate it if I get to the point where I could no longer do it.  I told him we need to get out more often so I can keep my strength up, but unfortunately the weather has not been cooperating much around here - it rains all the time.  Good luck to all you Gemzar girls!!!!  Linda


Dx 7/26/2006, IDC, 3cm, Stage IV, Grade 3, 0/1 nodes, mets, ER-/PR-, HER2-
PJB
Joined: May 2004
Posts: 2,639
Jul 31, 2009 11:06 am PJB wrote:

Well, my PET scan last week showed liver mets stable (I know, I know, that's good, but I wanted smaller) after two cycles of Gemzar/Cisplatin, but the real surprise was that my onc had "forgotten" to tell me after my June scan that THAT scan had also found bone mets. So, now I'm a double metster, mad as hell at my oncologist and unsure what the next step is except this: I got to MD Anderson on Tuesday for a consultation. 

Trying hard to keep up my hope that I will be here for a long time for my 11-year-old.

Paula 

konakat
Ottawa, ON
Joined: Jun 2007
Posts: 1,613
Jul 31, 2009 11:24 am, edited Jul 31, 2009 11:26 AM by konakat konakat wrote:

Wonderful news Nanalinda!!!  Yeah, seems that it's hard to do the 3 weeks on schedule -- same thing happened to me. 

PJB - I understand -- it's never fast enough.  It's hard for me to get excited about stable, but good news all the same.  I noticed these "forgotten" things with my onc -- do they think we can't handle everything?  My onc is more concerned about my liver than my bones so liver is always on the menu for discussion.  Please let us know what MD Anderson says.  You and I seem to have a similar situation (liver then bone showing up, unexpectedly...)

EDIT:  PJB -- is your onc going to add Zometa (or equivalent) for your bones?

Looks like we can add two more success stories, and that's what I love to hear.  I'm going nuts waiting until my PET, I just want to know one way or another!!

Have a great day!

Elizabeth

Elizabeth's Mantra: When in doubt, eat cake.
Dx 5/2007, ILC, 3cm, Stage IV, Grade 3, 13/19 nodes, mets, ER+/PR+, HER2+
Nanalinda
NY
Joined: Jan 2009
Posts: 341
Jul 31, 2009 12:40 pm Nanalinda wrote:

Paula:  I am glad your liver mets are stable, but I am sorry they found bone mets.  I hope you find answers at MD Anderson.

Elizabeth:  Do you have a date yet for your PET?  I will be crossing my fingers for you.

Linda


Dx 7/26/2006, IDC, 3cm, Stage IV, Grade 3, 0/1 nodes, mets, ER-/PR-, HER2-
roachrp
Joined: Aug 2008
Posts: 44
Jul 31, 2009 04:35 pm roachrp wrote:

hello ladies!  was just on abraxane for a few months and ct showed major liver progression, so wednesday i will be switching to gemzar.  would love to join you all to share experiences.  abraxane was a breeze for me so i was sad that i had lots of progression on it.  hopefully the gemzar will be easily tolerated.  i feel like i have been on every chemo imaginable at this point.  if you have any advice for me, please send it along.  i requested no premeds, and PA advised at least 8 mg zofran one hour prior.  i do not like decadron....i like my sleep.  hope everyone is feeling well today.  hugs to you all.


Dx 3/1997, 3cm, Stage IV, Grade 1, 3/13 nodes, mets, ER+/PR+, HER2-
roachrp
Joined: Aug 2008
Posts: 44
Jul 31, 2009 04:37 pm roachrp wrote:

ps...sorry i forgot to mention.  i am trying two weeks on, one week off to see if platelets do better that way.  if not, PA said they will either reduce dose or go to one week on, one week off.   sounds like you have to be flexible on gemzar.


Dx 3/1997, 3cm, Stage IV, Grade 1, 3/13 nodes, mets, ER+/PR+, HER2-
konakat
Ottawa, ON
Joined: Jun 2007
Posts: 1,613
Jul 31, 2009 05:41 pm konakat wrote:

August 10 for the PET. So one more Gemzar infusion on this Monday (Aug 3), PET Aug 10, Onc appt Aug 17 for results. I usually don't mind waiting until my onc appt for results, rather get them in person. I might not be able to wait this time...

Elizabeth's Mantra: When in doubt, eat cake.
Dx 5/2007, ILC, 3cm, Stage IV, Grade 3, 13/19 nodes, mets, ER+/PR+, HER2+
ilovemyswee…
Joined: Oct 2008
Posts: 114
Jul 31, 2009 10:32 pm ilovemysweetmomma wrote:

Hey there, I just wanted you to know I've heard good things about Gemzar. I was researching it a little bit more today on Susan G. Komen's site..here's the link. You should look this over, it will ease your mind.  

http://ww5.komen.org/ExternalNewsArticle.aspx?newsID=43604

Nanalinda
NY
Joined: Jan 2009
Posts: 341
Aug 1, 2009 09:07 pm Nanalinda wrote:

roachrp:  Glad to have you join us.  Keep us up to date on how you are doing.

ilovemysweetmomma:  Thank you for the link.  I will look at it tomorrow when I am not so exhausted.


Dx 7/26/2006, IDC, 3cm, Stage IV, Grade 3, 0/1 nodes, mets, ER-/PR-, HER2-
Denny123
Joined: Jan 2004
Posts: 2,486
Aug 2, 2009 09:43 am Denny123 wrote:

Just wanted to jump in here in case you didn't read my post on this thread back in June.

I had a clinical trial of Herceptin and Gemzar 6 years ago for 9 months which put my liver with very aggressive mets into remission.

 I am still in remission 5 years later and am on Herceptin for life.

Remember, the larger tumors will shrink rapidly, but the smaller ones shrink more slowly.

Praying that all of you have the same results that I did!

Denise

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