Gemzar

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diana50
diana50 Member Posts: 2,134
edited June 2016 in Stage IV/Metastatic Breast Cancer ONLY

hi people

Will be starting gemzar next Tuesday. Liver met got bigger on lxempra. Hoping to shrink tumor and then use abaltion. Or radiation. And continue chemo. All liver enzymes normal range and I feel pretty good.

Any help in managing SE or what to be in the lookout ๐Ÿ‘€๐Ÿ‘€ for would be appreciated. ๐Ÿ‘๐Ÿ˜˜๐ŸŒต

Thanks

Diana.

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  • Moderators
    Moderators Member Posts: 25,912
    edited October 2015

    Hi Diana -

    While you wait for the ever-helpful responses from your fellow members here, you may want to check out the main Breastcancer.org site's page on Gemzar, for a list of common side effects seen with this drug, with links to pages that have tips to help manage those effects.

    We hope this helps, and best of luck on your new treatment!

    --The Mods

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  • Becs511
    Becs511 Member Posts: 303
    edited October 2015

    Hi Diana,

    Sorry to hear about your progression. I just started my third cycle of gemzar today. I've had very few side effects on this combo (carbo and herceptin every 3 weeks, gemzar 2 out of every 3 weeks).

    I've had some mild indegistion and a little fatigue but that's about it. Of all of the chemos I've been on (and I've been on A LOT), this has been the easiest. No hair loss, no fevers, no nausea, no steroids with it! I've been able to go out and do stuff after my infusions.

    I have my first scan on this protocol on November so I'm hoping to stay on it for a while.

    Hoping the same for you!!

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  • nancyh
    nancyh Member Posts: 2,644
    edited October 2015

    Sorry to hear about the progression, Diana. I hope Gemzar is kind to you and tough on your cancer. After being on Ixempra, I'll bet Gemzar will seem like a walk in the park. I had a strange allergic reaction to it and had to stop after 2 doses, but most people tolerate it really well.

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  • diana50
    diana50 Member Posts: 2,134
    edited October 2015

    Thank you Becs and Nancy. New chemo new hope.

    Becs. Hope your Tx kicks your cancer to the curb. ๐Ÿ‘๐Ÿ‘Nancry been thinking about you. Hope you are doing well. Finally cooling off here; hoping to get back on road bike.

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited October 2015

    Just yesterday, my Onc was talking about Gemzar.

    When/if I progress on Ibrance/Femara, Gemzar would be his drug of choice. He told me of a study where they split the cohort of ladies receiving 3rd/4th line treatment into two groups. One would take Gemzar, and the other would do whatever their Onc thought would be good - you know, the giant wheel of chemotherapy. Gemzar outperformed the "whatever" group by a significant margin. So, he's a fan. Also, the SEs are very manageable.

    Can we make this into the Gemzar thread, like we have done with other protocols?

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  • diana50
    diana50 Member Posts: 2,134
    edited October 2015

    Jennifer

    Sounds good to me on making this the gemzar thread. Becs said SE not bad so looking forward to something different in that department. Lol.

    First infusion for me is October 6. Thanks for sharing your oncs perspective . New drug new hope. ๐Ÿ’ƒ๐Ÿ’ƒ๐Ÿ’ƒ

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  • Becs511
    Becs511 Member Posts: 303
    edited October 2015

    Hi Ladies. Just wanted to share that I had my carbo, gemzar, and hetceptinherceptinyesterday and I'm feeling totally fine today! I went out to dinner last night, and have been running around non-stop all day. Now on my way to hangout with my 5 month old nephew.

    Hope all of you starting gemzar have the same experience on it as I have been!

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  • hansaim
    hansaim Member Posts: 278
    edited October 2015

    Hi, Diana, I do not have any info on Gemzar, have not had it yet, but I just wanted to wish you effective and easy treatment with Gemzar. All the best.

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  • diana50
    diana50 Member Posts: 2,134
    edited October 2015

    It looks like I'm the only one getting Gemzar as single agent

    Today is first infusion. Schedule is 3 weeks on and one week off. Hopefully will decrease tumor burden.

    ๐Ÿ‘Š๐Ÿป๐Ÿ‘Š๐Ÿป๐Ÿ‘Š๐Ÿป. Take that cancer.

    Anyone else chime in. ๐ŸŽถ๐ŸŽถ

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  • RedStar
    RedStar Member Posts: 6
    edited October 2015

    Hi Diana: hope you are doing well with the Gemzar infusions! It was a good chemo for me after 5 rounds (I did the Gemcitabine/Carboplatin 21 days cycle) but stopped as my tumours were stable and I developed a problem as I've outline below.

    As for side effects: I didn't have many. My hair thinned out quite a lot but I still have some left. I always felt great after the first day of infusion because of the steroids. When they ran out, I was always on top of any nausea feelings by taking the Pramin right away. On the 3rd-4th day, I would sometimes feel that "hit by the bus" fatigue, but perhaps that could have been due to the highs previously experienced by the steroids. Mind you, I made sure I took advantage of the steroid days to be a little more active: walking 10kms with a friend, or doing housework and errands so these might have worn me out!

    However, I also experienced a bit of infusion pain when the Gemzar went in. For this the nurses always put on heat packs to deal with it. However, it got increasingly harder for the chemo nurses to find an veins to put the IV into. At one of my last infusions, I had also developed a huge blood clot in my right forearm so that prompted the port being put in. Anyways, hope that doesn't scare you, but just to be aware that it can happen.


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  • diana50
    diana50 Member Posts: 2,134
    edited October 2015

    Hi Redstar

    Read your post as a newbie. Lots of good info here as Maureen says and support. Glad your combination chemo is working for you. It's ok to take a break. I had 4 week break to attend nephews HS graduation out of state.

    This is only day 2 for me so with steroid on board feeling good. I'm like you , always take advantage of steroid days; I was able to road bike a little this morning. ๐Ÿšด๐Ÿป. I wanted gemzar and another drug with it but already had 30 taxols and 7 lxempras and neuropathy is bad and oncologist wanted to take break on chemosthat cause neuropathy. So doing the three weeks on and one week off of gemzar

    Starting my 4th year with mets and doing well. You will too. The treatments are good and many to choose from depending on your tumor type. Post questions. People will be around to help. Check out Bestbirds guide. ๐Ÿ‘

    You might want to talk with your onc about a port. Easier for chemo and better for your veins. Easier access for nurses. Less pain for you.

    Hang in there ๐Ÿ‘Š๐Ÿป

    Diana

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  • Becs511
    Becs511 Member Posts: 303
    edited October 2015

    Hi Diana. Just wanted to check in and see how you were doing a couple of days past your first Gemzar treatment. Do you have your second one today? If so, hope it goes well!

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  • diana50
    diana50 Member Posts: 2,134
    edited October 2015

    hi becs

    Thanks for checking in. First gemzar was easy. (Compared to lxempra). My next gemzar is tomorrow and then again next Tuesday. 3 weeks on 1 week off. Mostly just fatigue. Had to nap day 3 and a little day 4. Praying it will bring liver lesions down. Especially big one. 4cmx4.9 cm ๐Ÿ‘€. Really want abaltion on big one. With liver abalation you can get that done and still continue chemo. We will be able to tell if working if my TM comes down. It was 1300. Yikes. Need this to work or trouble looms. Boo Blood work still good. ๐Ÿ‘

    You are getting two agents and I only wish you good results. My feet were so bad from 30 taxols and 7 lxempra had to take break from chemos that cause neuropathy. Quality of life. Etc. etc. you take care becs. Still fighting. ๐Ÿ‘Š๐Ÿป. You too.


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  • diana50
    diana50 Member Posts: 2,134
    edited October 2015

    Just going to update the gemzar thread.

    Had my second gemzar 4 days ago. Not as easy as first one. Getting 3 weeks on one week off.

    Was good until third day around 9 am. Ended up with fever 101.4, bad headache and major aches. Cytotoxic chemo is right. ๐Ÿ˜๐Ÿ˜ Put myself to bed all day and forced fluids. Day 4 today fever came down to 100. Then today 6 pm 99.8. Going in right direction. Thought about calling doctor but then they want you to go to ER and I decided I was better in bed covered up. If it would have gone over 102 I would have gone to ER.

    Good news is my creatine is normal range which it hasn't been for four months. The gemzar appears to be clearing out cancer in belly. Praying its shrinking liver mets.

    Supposed to get third dose next Tuesday. With fever maybe onc will cx or lower dose. Depends on blood work.

    Everyone take care.


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  • Becs511
    Becs511 Member Posts: 303
    edited November 2015

    So I had my first scan today since starting Carbo/Gemzar/Herceptin....and....stable!! My triple positive mets remain NED and the triple negative mass in my breast has shrunk and nothing new popped up.

    Best news I have gotten in a while and my usually very stoic doc was so pleased she hugged me and kissed me on the cheek!!

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  • diana50
    diana50 Member Posts: 2,134
    edited November 2015

    oh. So happy for you Becs. Awesome news. Really ๐Ÿ’ƒ๐Ÿ’ƒ๐Ÿ’ƒ(happy dance)

    I saw my onc today. She said "usually" gemzar isn't so hard on patients. Once again I had 4 days with fever 101. 3 and in the 100.0's. Red rash everywhere and low blood counts. (From chemo last Tuesday ) two bags of blood two weeks ago.

    Tomorrow supposed to get #2 of second cycle. She will lower dose and also said I could do @every other week OR two weeks on and one week off. So far this has been most difficult chemo EVER. She believes lower dose will help with SE.

    The thing is my TM dropped 400 points after one cycle so I don't want to stop the drug. I will work within the perimeters. I still may decline gemzar tomorrow and allow for one more week to let blood counts recover. I don't think in the long run allowing my body to recover this week will make much of difference. I will decide when I get blood work tomorrow. But the 4 weeks I've gotten gemzar it has been brutal. ๐Ÿ‘€๐Ÿ‘€๐Ÿ˜ณ๐Ÿ˜ฌnot like.

    Anyway. Becs you are dong well and happy chemo is working for you. ๐Ÿ‘Š๐Ÿป๐Ÿ‘Š๐Ÿป Keep updating.

    Hugs.

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  • Crone
    Crone Member Posts: 160
    edited November 2015

    Just a heads - up to those on Gemzar. I had done well on Gemzar two weeks off and one week on since Dec. 2014. About six weeks ago my Blood Pressure which normally is in the 110/80 range started rising. One treatment it was in the 140 range and the next week in the 160 range. My hemoglobin kept falling until it was 7.2 and platelets were 17,000. Several days after having blood transfusions, I woke up to chest pain and after figuring out it was not indigestion, went to hospital. After numerous tests, I was diagnosed with Hemolitic Uremic Syndrome, a rare side effect of Gemzar.

    My MO was aware of the possibility of this side effect of Gemzarbut had never seen it. I am off Gemzar and waiting until I recover to decide what we do next.

    I don't want o alarm anyone It would be easy to ignore an increase in blood pressure but our bodies have ways of letting us know when something is wrong.

    Hoping you all continue to do well on whatever treatment you are on.

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  • diana50
    diana50 Member Posts: 2,134
    edited November 2015

    Thanks Crone

    Actually my onc talked with me about this syndrome and also did blood work to check. I was ok. No problems with platelets; just red blood cells and hemogloblin. Going to try lower dose. Hopefully will help. Gemzar appears to be working so I'm gong to try on lower dose. If SE (fever, rash, low reds) I will stop. Next Tuesday I go for chemo. Go from there. But thanks for info. I hope you can get things sorted out. That had to have really scary and unnerving with SE and hospital. Recover. Feel better.


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  • NewHopeAndrea
    NewHopeAndrea Member Posts: 27
    edited February 2016

    I am so happy for those of you who have tolerated Gemzar well, which is also the experience of my onco with many patients, to the point where he referred to it as the "baby stuff", pretty much assured me that people don't have nausea, vomiting, bad fatigue or etc. I am writing this not to scare or upset people just to say there is definiteIy something different about my body's response to this drug. I am a veteran of A/C and Taxol so not exactly a "baby" I don't think.

    I had my first treatment on the morning that we were getting 2.5 feet of snow in the evening. My husband and I were so reassured by my onco's description about everything that we prioritized storm preparations over picking up my nausea meds. That was my mistake, and I own it. It snowed all night and next morning I was sick as a dog. I am going to list the SE's below in order of appearance. I am 6 days since 2nd treatment with another tomorrow. I will be doing 4 in a row rather than 3, which I will explain below. No "walk in the park" chemo for me.

    Vomiting, nausea, severe body pains, extreme weakness and fatigue, violent shivering every evening with teeth chattering like castanets followed by middle of night waking drenched in sweat, thick white coating on tongue, mouth sores, and after second treatment the skin on my fingers is starting to peel as it did on Adriamycin.

    After the first treatment, we asked to meet with the doctor the day before my second treatment was due. We explained my experience. He flatly refused to believe it. He said my SE's were probably from other causes. I said I wasn't sure I could tolerate this chemo and he replied that then we should start talking about hospice and I should not kid myself about the experiences to come if I stopped chemo. Everything else he could give me was harsher. "This is the baby stuff" (he said twice during this conversation). We are meeting with a new onco Monday.

    I hope I am in a tiny minority and most of you have the experience that my doctor expected based on this other patients. But should you be unusual like me, don't get browbeaten like somehow it's your fault! I can stand this, but it was actually a disservice in my opinion for him to present such a one sided picture because were totally off guard. Round 2 we've been more proactive with the symptom control meds and etc. That doesn't change the fact that I spent 3 days mostly in bed, only felt human by Weds. (but still had the crazy violent shivering and night sweats), felt pretty good today and have treatment again tomorrow. So I'm getting 5 rough days out of a week.

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  • diana50
    diana50 Member Posts: 2,134
    edited February 2016

    Newhopeandrea

    I have had the roughest time on gemzar. I've had TAC in 2002, taxol, Lxempra and gemzar since October.

    SE start 3-4 days after; fever 102, aches, muscles hurt headache night sweats. Red rash all over body and edemia. I thought I might have to stop.

    My onc lowered dose and added 4 mg of decadron AM and PM days 4-6. This has helped so much. I actually brought the decadron down from 4mg twice to 2 mg AM and Pm. I have two more (3weeks on 1 week off ) before scans end February. My red blood cells and Hemogloblin have also tanked. I needed two bags of blood a few months ago as my Hemogloblin was 7.5.

    Ask about adding the oral decadron during the really bad days. My TM dropped half on this drug and I believe it's working. Some people say this is an easy drug. For some causes high inflammation with fever etc. the decadron seems to calm that down.

    Best

    Diana

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  • NewHopeAndrea
    NewHopeAndrea Member Posts: 27
    edited February 2016

    Thank you! I am going to ask about the decadron today when I go for treatment. Hope you continue to improve and wish you the best.

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  • NewHopeAndrea
    NewHopeAndrea Member Posts: 27
    edited March 2016

    I wanted to follow up on my earlier posts because my onco lowered my dose and I am now tolerating the Gemzar much better and less side effects. Especially for those about to start this treatment I wanted to sound a more positive note. I don't know if my initial harsh reaction was just sort of shock to the system (and the higher dose) after not being on chemo for almost 3 years, or may ironically have been partly caused by the anti-side effects meds. Last week was my first treatment after the "off" week and I had taken Zofran, even though I wasn't that nauseous, and had a bad headache for 2 days. Then I read the Zofran label and it said "may cause headache." This week I stayed strictly away from the Zofran and just had a few days of aches and weakness - not bad at all. Thinning hair, but - oh well. I can live with that. I do need to have a port put in because it's started to hurt during the infusion. Best wishes to all of you Stage IV sisters ...

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  • diana50
    diana50 Member Posts: 2,134
    edited March 2016

    newhopeandrea

    Glad onc lowered dose. I have had hard time with this chemo Also but it works. Are you getting 3 weeks on and one week off ?

    Hopefully I'll be back on gemzar end of March as I recover from pneumonia. Picked up influenza A ( bird flu ...ick ) and still recovering. Please stay in touch on gemzar thread. Great to hear from you.

    Diana

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  • kebab
    kebab Member Posts: 873
    edited March 2016

    I've been having a really tough time with Gemzar also. I'm just finishing cycle 5 -- 3 weeks on, 1 off.

    My onc also gave me steroids to take am and pm for the 2 days following infusion and they have definitely helped. We also found that slowing the drip just a little seems to help me. The nurses run it over 45 minutes instead of the prescribed 30, and it's better. I also get a bag of saline for extra hydration at the end of my infusion. I still have side effects of course (body pain, headaches, night sweats) but they are so much easier to manage now.

    Right now my problem is that my platelets tank after the 2nd week and I have to hope and pray that they'll be high enough to get that 3rd infusion. (If anyone has tips for raising platelets, I'd love to hear them too!).

    Best to all of you.

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  • diana50
    diana50 Member Posts: 2,134
    edited March 2016

    Keba

    Glad the steroids helped. They sure helped me otherwise I would have stopped the gemzar

    Ask your onc to check iron levels. Mine were low so I started over the counter iron And my platelets elevated TOO high. The iron also helped the red blood cells but I'm off the iron now.

    This gemzar supposed to be easy. NOT for me either.

    You can also do two weeks on 1 week off. Most important is to do in a row. Whether 2 or3 weeks. Gemzar had worked for me and i hope to stay on it until it stops working.

    It's hard but hang in

    Diana

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  • Groovywilma
    Groovywilma Member Posts: 450
    edited March 2016

    Hello! Gemzar is my next stop for treatment. Ibrance with Femara, and Xeloda did not work as I hoped. Gemzar is my first IV chemotherapy, after being diagnoses with MBC more than five years ago. I hope to gain info from you all here. I'm waiting for the call to schedule getting a port. I will be three weeks on, one week off. I hope it works for a long time!!! Just wanted to say hi to everyone here!

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  • woodburns
    woodburns Member Posts: 56
    edited April 2016

    I start Gemzar in the next few weeks. The schedule will be 3 weeks on and 1 week off. Was on Havalen but it did not work. I have a thorancentisis scheduled for Wednesday on my left lung. I have plural effusion in both lungs. Left one is the fullest. On Thursday I have a consultation with an oral surgeon to have a tooth pulled. Been off Xomada for 3 months now so hopefully will not have problem with any jaw bone dieing. Once all this is done, I can start Gemzar. Thank you for the information you have already posted concerning side effects. This will be a big help to me for what to watch for.

    I will post my side effects once I get started.

    Thank you

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  • Becs511
    Becs511 Member Posts: 303
    edited April 2016

    Hi Woodburns!

    I have been on Gemzar (along with Carbo and Herceptin) since the end of August, 2015 (so about 7 months) and it has been very easy for me to tolerate. I get my infusions on Friday mornings, usually rest on Friday afternoons and evenings, but am still able to go out and do things on the weekend, and head into work bright and early on Monday mornings. I do get some fatigue but am generally able to power through. It has kept me totally stable from the neck down and hope it continues to do so for the long haul.

    Best of luck on it!

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  • woodburns
    woodburns Member Posts: 56
    edited April 2016

    Thank you Becs511. This is good to know. Onc's nurse called today. Said I start my treatment next week on Thursday. Hopefully I can work on Friday. That is also the weekend my daughter and my 2 grandsons, 7 & 8, will be here. Hope I am up for some fun

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  • Groovywilma
    Groovywilma Member Posts: 450
    edited April 2016

    Hi woodburns,

    Good luck with your first treatment! I had my first Gemzar last week on Thursday. They gave it to me with zofran and decadron. I also got my zometa infusion the same day. I did OK except super tired over the weekend. Tomorrow is my second treatment. Let me know how yours goes! I also plan to continue working while on Gemzar. Take care!

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