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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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Moochie-
GA
Joined: Jun 2009
Posts: 8
Jun 23, 2009 05:50 pm Moochie- wrote:
Wow Linda,
I would tell you my history but I don't have to because it's practically identical to yours.  I recurred in June 2008 and had 50 rads and was started on Taxol/Avastin.  Dropped Taxol after 7 cycles.  Avastin failed in early June with 2 months of elevating TM's and 3 more lung spots to go along with very extensive bone/spine mets.  I'm starting Gemzar next Wednesday.  Will also have Nexavar or placebo for a trial.  In my other group, others say Gemzar is easily tollerated.  The trial nurse said there are no pre-meds so that sounds like Avastin.  Doc said I wouldn't loose my hair (it came in fast after Taxol was dropped).  I don't have a lot of info on how effective it is.  It is a drug that has been around for a long time... 15 to 20 years although I don't know how long it's been used for BC.
 
Best of luck!  robin

Dx 1/29/2004, IDC, 2cm, Stage IV, Grade 3, 2/6 nodes, ER+/PR+, HER2-
PJB
Joined: May 2004
Posts: 2,639
Jun 23, 2009 08:06 pm PJB wrote:

I'm getting Gemzar/Cisplatin after switching from Taxol Avastin. I've only had one round so far and am getting the two drugs together. I did get premeds, but those might be mostly tied to the Cisplatin. So far, my main complaint is fatigue, makes it hard to work. I think I'll feel OK again just in time for second treatment.... 

Good luck to both of you and let's hope Gemzar is really, really a cancer killer.

Paula 

FloridaLady…
Joined: Dec 2006
Posts: 2,155
Jun 23, 2009 08:42 pm FloridaLady wrote:

Hey Nanalinda, 

I did carboplatium, Gemzar & Avastin as my 2nd round of chemo after recurrence.  I had a good response for about four months.  I did weekly CG and every 15 days Avastin. I found this a doable chemo after ACT, 

Flalady

trip neg stageIV spread to IBC (2X) & 7 recur's, Treat Alt & Conv
KLynn
Joined: Jan 2007
Posts: 1,389
Jun 23, 2009 10:30 pm KLynn wrote:

Hey Linda..and Robin...

I had a great run with Gemzar...When I was dx with my  recur to the lungs, doc started me on taxotere, I was on that for about 3 months with no change, and tumor marks never dropped..He quickly switched me to Xeloda (which I hated)...caused terrible digestive problems for me, but I tried to stick it out, and had my dose lowered many times..I was on that for about 7 months, before I asked to switch again...That's when he put me on Gemzar..I was on that for about a year...My tumor markers were starting to come down on the Xeloda, and shrinkage was noticed, but with the Gemzar they continued to drop..I believe I was mostly tired on the Gemzar, and had to deal with some low counts, but it was much easier for me than Xeloda...I have been off of strong chemos for about 1 1/2 yrs.  only getting herceptin and the lupron shots..I just recently had some slight change in the lungs, and doc is trying to avoid chemo again for a bit, so we are trying a different route right now..I think I could always go back on Gemzar if I had to, since I had such good results..Hope this is helpful...and good luck to you both.... 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+
konakat
Ottawa, ON
Joined: Jun 2007
Posts: 1,610
Jun 24, 2009 12:14 am konakat wrote:

I've only had 1 cycle of Gemzar -- well, I had to skip the last infusion since my platelets tanked.  Apparently this isn't uncommon.  And I've had terrible aches -- just like I had with taxol.  However, keeping my hair and no premeds are major pluses.  It's too early for me to say if it's working, but I've read other people's posts in other discussions and they've had excellent results with Gemzar.  Taxol failed me too after a good run (2 yrs) so I'm hoping Gemzar is the one that works.

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
Jun 24, 2009 08:26 am Nanalinda wrote:

Thank you all for responding to my plea for information.

Robin:  Good luck to you with the Gemzar.  We will have to keep track of each others progress.  Not loosing hair.... that is great!  I didn't even think of that.  Mine started growing back slowly while still on Taxol/Avastin.

Paula:  Good luck to you too.  Keep us informed of how you are doing on the Gemzar/Cisplatin combo.  I am surprised my onco didn't add the Cisplatin to my Gemzar as I think I read that it is a good drug choice for triple negs.  Fatigue....  I know it so well.  Not looking forward to it again.

Flalady:  Thank you for the info.  Sorry it only worked about 4 months for you.  I know you have been through alot.  It is good to hear this chemo is doable as I want to be able to enjoy the rest of summer.

KLynn:  I am glad Gemzar worked for you.  It sounds like it was a good idea my onco decided to wait on the Xeloda for now.  I am sorry to hear about the change in your lungs.  I hope you are able to avoid the chemo's for a little while longer.

Hugs and prayers to all of you.  Linda


Dx 7/26/2006, IDC, 3cm, Stage IV, Grade 3, 0/0 nodes, mets, ER-/PR-, HER2-
Bonnielv
NV
Joined: Oct 2007
Posts: 293
Jun 24, 2009 04:58 pm Bonnielv wrote:

I too will be starting Gemzar next Tuesday.  Onc said there are few se's although white/red cell counts tanking is usual.  I was on doxil for 3 rounds and the se's were just too much.  Hoping onc is right and after reading posts it seems doable.  Will keep you informed.

Orig dx IDC Stage 0/10 nodes
Dx 9/2007, , Stage IV, 0/10 nodes, ER+/PR+, HER2-
Moochie-
GA
Joined: Jun 2009
Posts: 8
Jun 24, 2009 07:09 pm Moochie- wrote:

Linda,

My hair started coming back with the Taxol also (I shaved it off after 2 tx and fallout).  I called it Taxol hair... very thin and gray.  I wanted to shave it again but my husband wouldn't let me.  When I dropped Taxol, my dark brown hair came back.  For a while the gray was still there but it eventually fell out and I've just got my regular hair.

 I had my bonescan today, a requirement for the trial.  I have a dr appt, blood and pregnancy tests tomorrow and I'm all set for next week.

I'll be thinking of you Friday.  Let's stay in touch.


Dx 1/29/2004, IDC, 2cm, Stage IV, Grade 3, 2/6 nodes, ER+/PR+, HER2-
vivo
Greece
Joined: Mar 2009
Posts: 324
Jun 24, 2009 07:23 pm vivo wrote:

Linda

 I have finished my chemo work 3 weeks ago and feel fine. I had supraclavicular lymph nodes surgery since breast couldn't have surgery and I was on Gemzar /Taxotere and Herceptin. Gemzar is supposed to be better tolerant than other chemo drugs and I think is used for different kind of cancers.So it can help for the spots on lung and trachea and that's the reason I also had it in first line treatment. I had hairfall but I think it is only due to Taxotere. Also some side effects like fatigue is often but I feel are tolerant and doable.

I wish you the best and keep going!

The meaning of life is not what you learn but what you teach
Nanalinda
NY
Joined: Jan 2009
Posts: 341
Jun 25, 2009 07:00 am Nanalinda wrote:

Robin:  My hair grew back gray also, but I think it is going to stay that color but I am 52 after all.  Bonnie:  Good luck to you too on your knew treatment and keep us informed of how you do.  It looks like there are a few of us starting around the same time and it would be good if we kept tabs on each other. 

Vivo:  Thank you for the information.  It is always good to know that someone else has been through it and it is better tolerated.

Linda


Dx 7/26/2006, IDC, 3cm, Stage IV, Grade 3, 0/0 nodes, mets, ER-/PR-, HER2-
Denny123
Joined: Jan 2004
Posts: 2,486
Jun 26, 2009 11:35 pm Denny123 wrote:

I started on a clinical trial of Gemzar and Herceptin in Jan, 2004 for aggressive liver mets. After 9 months, my liver went into remission.  I am still in remission now (for 5 years!!!) and will be on Herceptin for life.

My hair thinned out some on Gemzar, and I had some nausea the evening of treatment.

I drank 4 oz of RED grape juice and my platelets were pretty good the whole time.

Gemzar was very easy for me and it worked beautifully!

Denise

Nanalinda
NY
Joined: Jan 2009
Posts: 341
Jun 27, 2009 09:59 am Nanalinda wrote:

Denise:  Congratulations on your remission!!  Great news.  Can you tell me about the red grape juice?  How often did you drink it  It is supposed to keep your counts up?  I have been lucky that my counts never dropped too low on the Taxol/Avastin or even on the TAC.  I am very glad for you that the Gemzar worked so well!  Now I hope I will see good results as well as all the other girls just starting on it.  Linda


Dx 7/26/2006, IDC, 3cm, Stage IV, Grade 3, 0/1 nodes, mets, ER-/PR-, HER2-
Denny123
Joined: Jan 2004
Posts: 2,486
Jun 27, 2009 07:42 pm Denny123 wrote:

Hi Linda,

Thanks! I read on the bcmets site about drinking the red grape juice and figured that it wouldn't hurt-might help.

I drank 4 ounces a day and it is delicious.  Welches makes it.

Denise

Nanalinda
NY
Joined: Jan 2009
Posts: 341
Jun 29, 2009 08:23 am Nanalinda wrote:

Well, I had my first dose of Gemzar on Friday.  They did give me pre-meds, so I was a bit groggy the rest of the day from the Benadryl.  On Saturday, the steroids kicked in and I was Superwoman!!  I cleaned, cooked, and shopped all day.  By mid-day on Sunday, I was exhausted and in a lot of pain from my spine mets from over doing things on Saturday.  This morning the pain is better, but I am still a little fatigued.  I have had no nausea at all, but not much of an appetite either.  So, it seems this will be doable after all.  I just have to learn not to over do from the steroids.  Now, I just hope the Gemzar kicks cancer's butt!!!


Dx 7/26/2006, IDC, 3cm, Stage IV, Grade 3, 0/1 nodes, mets, ER-/PR-, HER2-
MaineCoonKi…
Mt Vernon, OH
Joined: Apr 2009
Posts: 77
Jun 29, 2009 08:46 am MaineCoonKitty wrote:

I will be starting Taxotere and Gemzar in a couple of weeks as my initial chemo.  My story is quite different from most of yoiu, so I'm very glad I found this thread while looking for some info on the Taxotere/Gemzar combo.

I was diagnosed in May 2009 with a malignant Phyllodes tumor and had a mastectomy shortly afterward.  Phyllodes is very rare and malignant Phyllodes is ever rarer, less than 1% of the diagnosed BC cases each year.  It's so rare that there have not been many studies or trials about the benefits of either chemo or radiation and mastectomy alone is the usual treatment.  The last major study was done in 1995 with just 171 participants, using a follow-up course of radiation but no chemo.

My oncologist recently presented my case to the local tumor board because there is a new study being done in Denmark which shows promise with Taxotere/Gemzar, so she and the rest of my team have offered that option to me and I will be their guinea pig. Although my breast surgeon got good, wide clear margins and there was no lymph node involvement or evidence of disease anywhere else on the CT/Pet scans, I've decided to take the chemo and aggressively fight this beast from making a return.  I will take 6, 3 week cycles of T/G and then do radiation for several weeks.

At best, it will clean out any remaining cells that might be lurking; at worst, it won't do a thing and I will have to rely on vigilance and surgery to catch any recurrence early.  Either way, all I'll be out is some hair and a few tough months, so it's worth taking the chance that my case will be the start of new research for women with Phyllodes, since so little is really known.

Bonnielv
NV
Joined: Oct 2007
Posts: 293
Jun 29, 2009 01:11 pm Bonnielv wrote:

Interesting that some have premeds and others don't.  Nanalinda, did you have anti-nausea premeds?

Orig dx IDC Stage 0/10 nodes
Dx 9/2007, , Stage IV, 0/10 nodes, ER+/PR+, HER2-
konakat
Ottawa, ON
Joined: Jun 2007
Posts: 1,610
Jun 29, 2009 02:46 pm konakat wrote:

Hey -- my face has started breaking out on Gemzar!  Anyone else have this annoying SE?

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
Jun 29, 2009 09:16 pm Nanalinda wrote:

MaineCoonKitty:  Best of luck on your treatment.  Please keep us informed of how you are doing.

Bonnielv:  Yes, I had anti nausea as well as the benadryl and steroids.  It must be a physician preference as to whether or not we receive them.  I would rather not have the steroids as they jack my blood sugars sky high and I am now an insulin dependent diabetic.

Konakat:  That just stinks.  It is bad enough to have to have these damn chemo treatments but to have your face break out too just isn't fair.  Did you try to increase your water intake to see if it improves?  I know the more water I drink, the better my complexion looks.

Take care everyone....  Linda


Dx 7/26/2006, IDC, 3cm, Stage IV, Grade 3, 0/1 nodes, mets, ER-/PR-, HER2-
Nanalinda
NY
Joined: Jan 2009
Posts: 341
Jul 1, 2009 09:27 am Nanalinda wrote:

Owwww....  I have a huge cankor sore under my tongue.  Very uncomfortable.  Have been doing the salt water rinse 4 times a day but still uncomfortable.  I never had problems with mouth sores with any of my prior chemos.  Does anyone out there have a better suggestion on what to do with this?  Thanks, Linda


Dx 7/26/2006, IDC, 3cm, Stage IV, Grade 3, 0/1 nodes, mets, ER-/PR-, HER2-
Nanalinda
NY
Joined: Jan 2009
Posts: 341
Jul 4, 2009 08:28 am Nanalinda wrote:

Well I had my 2nd dose of Gemzar on Thursday.  They almost didn't give it to me because my WBC was borderline, but my onc. said give it but cut the dose a bit.  I may have to start Neulesta depending on how the WBC looks next week.  I also found out that they gave me 10mg of Decadron last week and that was why I was superwoman the day after.  While I was on Taxol/Avastin I had talked them down to 4mg on Decadron and assumed they had continued that dose.  So yesterday I asked for 4mg; the onc. was concerned I would experience nausea but allowed it and sent me home with some sample packs of Kytril.  Well, I was up at 2am last night very thankful I had it as I was quite nauseas.  The high dose of Decadron takes my blood sugars up into the 500's on chemo eve and I need to take high doses of insulin for a few days.  I still have some sugar elevation with the 4mg dose but it doesn't go as high.  I will wait and see how much more nausea I experience and make a decision next week on how much decadron to take before my next dose.


Dx 7/26/2006, IDC, 3cm, Stage IV, Grade 3, 0/1 nodes, mets, ER-/PR-, HER2-
konakat
Ottawa, ON
Joined: Jun 2007
Posts: 1,610
Jul 4, 2009 11:41 am konakat wrote:

Nanalinda -- I don't know what to do about the canker sore -- ouch is right!  Yeah, decadron makes me want to leap the tallest building, or at least polish the floors!  I can't sleep for a couple of nights after it!   I didn't realize that it had such an effect on blood sugar - wow! It helps with one thing and screws up another! 

I'm getting neupogen, 3 days worth of shots, for my WBC.  So far so good with them.  But my platelets go really low -- I had to miss one week of Gemzar because of that.  Sigh...  But from what I've seen from other women is that they've had great results with Gemzar -- let's hope it's the same for us!!!!

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 4, 2009 12:31 pm Bonnielv wrote:

Had 1st tx Tuesday.  Did receive pre-meds.  Onc nurse told me that gemzar burns going into the vein and put a heat pack around my iv site.  Were any of you told this?  The only problem I've encountered is today, I feel somewhat weak and kind of light headed.  Wondering if platelets are low.  What do they do if platelets are low?

Orig dx IDC Stage 0/10 nodes
Dx 9/2007, , Stage IV, 0/10 nodes, ER+/PR+, HER2-
konakat
Ottawa, ON
Joined: Jun 2007
Posts: 1,610
Jul 4, 2009 02:16 pm konakat wrote:

Gemzar burned for me too -- they reduced the flow rate.  I've had aches and been very tired.  For low platelets they can only reduce the dose for next time or give a transfusion if they are dangerously low.  Since my onc is reluctant to do a tranfusion she reduced my dose once and then the next time they were even lower so she had me skip a week. 

Someone else here said she was rarely on schedule for the treatments due to low platelets but still managed to go into remission.  So, I try not to worry about it too much.

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 5, 2009 07:54 am Nanalinda wrote:

Hi ladies:  Hope you had a great holiday.  I have a port in so I did not have the burning issue with the Gemzar.  I am tired today, but I don't think the fatigue is anywhere near as bad as what I experienced with the Taxol/Avastin.  I think it is because of lack of sleep from the steroids.  Yeah, it is nice to have lots of energy though and get lots of work done the day after chemo, but my GP has fits over my blood sugars and I don't want to run into complications from diabetes along with everything else.  Oh well.  The platelets help your blood to clot so be careful about cutting yourself while they are low.  I hope we all have great results and minimal SE's from this drug.  Konokat:  How well is the neupogen tolerated?  Are there many SE's?  Take care all, and good luck with next weeks tx.


Dx 7/26/2006, IDC, 3cm, Stage IV, Grade 3, 0/1 nodes, mets, ER-/PR-, HER2-
konakat
Ottawa, ON
Joined: Jun 2007
Posts: 1,610
Jul 5, 2009 11:55 am konakat wrote:

Hi Nanalinda,

I find the Neupogin shots are a lot easier than the Neulasta shots.  I get a few minor aches but that's about it. Sometimes no aches at all -- guess it depends on how tired I am.

So far I've found Gemzar easier than any other chemo I've had.  When I used to get decadron with taxol on Friday I never could sleep until Sunday afternoon -- too wired! 

Elizabeth's Mantra: When in doubt, eat cake.
Dx 5/2007, ILC, 3cm, Stage IV, Grade 3, 13/19 nodes, mets, ER+/PR+, HER2+
konakat
Ottawa, ON
Joined: Jun 2007
Posts: 1,610
Jul 5, 2009 12:50 pm konakat wrote:

I forgot to mention my favourite SE on Gemzar -- my appetite has been supressed.  I used to joke with my girlfriends about wondering when the "cancer diet" would kick in with all the chemo.  From a combo of comfort food and Decadron munchies I put on 15 pounds.  Now it is finally coming off.  :-)

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 5, 2009 04:50 pm Nanalinda wrote:

I have noticed too that since I started Gemzar, I have not had the appetite that I used to.  Maybe I can lose some of the weight I have put on over the past few years.  It would be nice.  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: 1,610
Jul 6, 2009 02:54 pm konakat wrote:

Ugh!  About half of my bloodwork came back in the "abnormal" zone.  Platelets still screwy but still got my infusion.  Because it is sending so much out of whack I'm stopping the 3 weeks on, 1 week off to getting my infusions every 2nd week instead.  I'll still get weekly bloodwork just to keep an eye on things.  It's funny that I don't feel bad, other than a bit tired.

But I still have great faith in Gemzar from what others have posted.  I have an MRI next Monday to see if it's working.  I'm not able to get a CT scan because the tumors were too small to show up on the CT part of the PET/CT a month ago.  At least they're small, but they are taking up more of the sugar stuff.  Grrrrr. Anyway, I hope I can contribute to the good reviews of Gemzar in just over a week.

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 7, 2009 07:54 am Nanalinda wrote:

I too have great faith in Gemzar.  In fact, I know it has already started to work after only 2 doses.  I have a number of tumors in my neck and supraclavicular area that are palpable and they have gone down considerably.  This happened at first with the Taxol/Avastin to where we couldn't feel any of the tumors, but when that combo stopped working, they started to grow again.  I just have to hope that the gemzar works longer than the Taxol did.  Good luck on your MRI Konakat, I hope you get good news.  Please let us know how it goes.  Linda


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 8, 2009 09:47 am Bonnielv wrote:

I had my 2nd tx of gemzar yesterday and onc reduced my dosage in 1/2 due to low wbc.  Have neuprogin shot today to help boost them up.  Hope this stuff kicks butt!

Orig dx IDC Stage 0/10 nodes
Dx 9/2007, , Stage IV, 0/10 nodes, ER+/PR+, HER2-

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