Gemcitabine

cmmacneil

Hi I've had a recurrence and will be going for a treatment of Carboplatin and Gemcitabine on Monday.  When I was first diagnosed with stage 3, I had 6 rounds of carboplatin and taxol. Does anyone have any experience with Gemcitabine?  I am wondering what I can expect and if you have any advice for me.  

MarilynOCC

Hi @cmmacneil.  I see that you haven't received any responses yet about Gemcitabine. I believe that @meganG may have been on that drug.  I have tagged her here so she can see the post.  How was your first treatment?

_kathallen

Hi,I'm Kathy and I'm new to ovdialogue,creating an account early September 2017 but not creating a story or participating in discussions. I have had 6 treatments of Gemzar or Gem as the nurses call it. I go once a week for three weeks then a week break. I found the day after my first treatment I had body aches and feeling like I had the flu lasting 3-4 days. I had my dosage reduced after the first three which has helped to diminish the severity for the last three.I have achy joints,mostly my knees and muscle weakness,mostly my upper legs. I do experience periods of tiredness,resting when my body tells me and when i have energy,using it as my body allows. I have had to come to terms with being idle,satisfied with doing what I can and not what I used to be able to do. Hope this has helped and I hope to post my story soon.

Flowergirl

Hi @_kathallen - thank you as well for posting about the treatment other than Paclitaxel and Carboplatin... that seems to be a theme on any of the medications - achy joints... I hope you are doing well today and we look forward to hearing about your story. If you are available - try joining our chat on Teal Tuesdays @ 7:00 PM CST 

MarilynOCC

Hi @_kathallen.  Welcome to your first discussion on OVdialogue.  I hope that you will continue to contribute to the conversations.  I am "@mentioning" @cmmacneil who first posted this discussion and was looking for some information.  When you @mention someone they will be notified of the comment.  Hopefully it may be helpful for the two of you to connect.  You can also send a private message to someone.  Beside your name in the top right corner you will see four icons.  The second one - an envelope - is where you can send and receive private messages.  Click on that and click new message and go from there.  

Thanks for sharing your experience with Gemcitabane.

_kathallen

Hi @Marilyn thank you for welcoming me and the info on communicating with others here. I will work on navigating this site and my story.

_kathallen

Hi @Flowergirl. Your welcome and thank you for the invite to Teal Tuesday. I will work on my story, navigating this site and joining in on Teal Tuesday. 

amyc

Hi @_kathallen
Thanks for sharing.  I will be starting gem in the next couple of weeks.  It is good to have an idea of what to expect.  If you have the capacity for an update, it would be appreciated.

Donnybrook

I started on Gemcitabine in February 2021 after 10 months of Avastin as a maintenance. My cancer became more active so this was the next step.  I find that the burning veins are my biggest problem and if I am going to continue on with it then I may get a valve (not sure if that is the right term) put in so the medication doesn't have to go through all my tiny veins.  I also have sleeplessness, bloating and heartburn.  There is a medication for everything and I sometimes feel like I need to detox from all of that.

Fearless

@Donnybrook I'm so sorry for the discomfort you're feeling with the Gem.  I assume they've tried to slow down the infusion and/or increased the amount of saline to Gem to help alleviate the burning? 

I"m on my second round of Gem right now. Back in 2017 when I was first diagnosed I had a massive reaction to Paclitaxel so they switched me to Gem in combination with the Carboplatin I was also getting.  Gentle Gem they called it....ha ha. Only because I didn't lose my hair and other side effects, if any, are generally milder than what you get with Paclitaxel. But no one warned me about the burning in the veins....sheesh!  By the end, even the slowest drip and the most saline in the mix didn't keep me totally burn free and I've ended up with veins that are not only very tiny, like yours, but also deep and squiggly and now, thanks to Gem, quite scarred.  So trying to just find a vein for an IV let alone not have it collapse is an ordeal. So when I recurred this past December and put back on the same drug combination we went with the chest port and I can't tell you what a  relief it's been.  Totally painless.  The port is used for both the chemo as well as all my blood work too. The only thing they can't use the port for are the CT scans.....the port is not strong enough to manage the pressure of the dye when it's infused apparently.  And unlike a PIK line that has to be flushed every week, you don't need to flush a chest port at all while you're in chemo and after, if you leave it in, it only has to be flushed once a month.    

I admit I was nervous about having the port installed when they first suggested it and told me it's done with no anesthesia. But it was literally pain and hassle free.  It's done by a radiologist. You're given mild sedation..actually loved that part LOL....and  then they freeze around the area.  You're draped like normal surgery so you can't see anything and you literally feel nothing...just a little pressure on your chest. And it's over in a flash. More surprisingly, while it takes a few weeks to heal, they did my next chemo the next day using the port.  And the poke when they insert the needle into the port is painless for me I don't use anything. Some do use a numbing cream though. I'm so glad I didn't just try to grin and bear it which is my normal.  So, if that's what they're recommending I highly suggest you go with it.  And side benefit...the chemo even goes faster.

Good luck gal.. 

Donnybrook

@fearless Thank you so much for your response.  I did end up getting a Power Port installed (I feel like a car that got a new part installed) which works for chemo and CT scan in my case but not blood tests.  It was quite easy to get and I loved the sleepy stuff during the procedure.

I've had two chemo sessions since and it was worth it!  Such a relief and my veins can now heal.  I don't use the numbing cream nor have I been offered it so not sure if that is an option here in BC.

Fearless

@Donnybrook
so glad it worked out for you. I thank everyday for my port. Although so jealous yours can be used for scans. I'd surely give up blood draws and go back to old tried and true method if I could get rid of the scan IV and use the port. I guess each province has their different approved products...LOL, I have heard BC is way ahead of everyone in almost everything.  Guess this is just one more example.   

Donnybrook

@Fearless - Vol Mod
I totally agree and that is exactly what I thought when the nurse was explaining it to me.  I think there are different levels of ports from the way she talked as she told me more than once to ensure I told radiologists and nurses that I had a Purple Power Port.  The scan IV's are brutal aren't they.  Not that they try to be, it is an in and out procedure and they have a lot of patients.  Plus the whole over your head thing doesn't help with the IV either.

I will have to ask the nurses at my next chemo if BC is way ahead.  I always thought Ontario was the most progressive when it came to health care.  I cannot say enough good things about our BC Cancer Agency.  They are a stellar organization and the staff are amazing.  I have not run into a single person that I would complain about and they are really very organized.  We even have laboratory appointment bookings now so I can get my blood tests at 7am and get to work only a half hour late.  How cool is that?

I truly think that every province should have the same access, same level of health care etc.  But I feel like that about our education system too.  It should be National Health Care and National Education System.  If one province is super busy then the alternative to book an operation in a province that has space should be available.  If you move to another province, your medical records follow you.  That is a whole other topic, perhaps not for this forum.  LOL

Fearless

@Donnybrook
A great post, and the issue about national versus provincial support is one that would be interesting for one of our weekly live chats.  If you're ever available at 1pm EST on Thursdays, love to have you join us. You need only sign in to OVdialogue and click on Teal Thursday discussion topic and that takes you right into the chat. 

I'm not sure the port issue here.  Whatever is in use is approved by the Ontario system. Perhaps what you have has yet to be approved. Perhaps my own hospital just goes the cheap route LOL. I will ask next time I'm in about the port you have though.  Yes, we do have great care here; much of which I credit to Princess Margaret being in our province.  But Ontario is still so decentralized that even the treatment at Kingston General cancer centre where I go will not necessarily be mirrored at the cancer center in Ottawa or elsewhere. I count myself fortunate that KGH is really quite leading edge and more aligned to PMH in Toronto. 

Well gal, off to my CT......can't you feel me shudder as I think about the IV?  It's been awhile and staff have been changing lately so I'll probably have to go into my usual preamble about the state of my veins, the size of needle they have to use and instruct them to drop the pressure of the dye infusion.  Since it's been a long while since I was scanned, and this one will impact my go-forward program I really want them to get a good picture. 

Donnybrook

@Fearless - Vol Mod
Good luck, I hope your CT went well.  
As it happens, I will be home tomorrow and will definitely try to get onto the Teal Chat.  Thank you.

tdubs17

Hi, haven't been on in awhile.  I also recently got the *purple* port installed.  Life saver.  I am on GEM as well and veins were shot.  Last straw was 8 pokes to get chemo IV, I was scared to get port installed prior, but after that..I was like nope... got it installed, pain free!  I am in Edmonton and have to say Cross Cancer Institute is fantastic.  its showing is age, but not slowing down with fantastic nurses, procedures and comfort.  My CA 125 has dropped in half in the last 7 weeks I've been on GEM.  Side effects minimal.  Had first port draw for blood today, again painless and my veins thanked me.  How do you guys work around the blood test and chemo (2 appts per week) for 3 weeks a month?  I guess is my new job now.

Fearless

@tdubs17

Glad you 'braved' the port procedure.  I don't know anyone who wasn't a bit squeamish about the thought of it being installed, without general anaesthesia.  But it really is so easy and what a relief, especially for those of us on Gem. 

So glad your CA125 is dropping.  I have two friends here who have just started a Gem only treatment plan so they'll be glad to know of your success, and like me, no side effects to speak of....although keep an eye on your neutrophils. It's traditionally pretty hard on the white cell counts. 

I don't work anymore....retired thankfully...and Gem is only a secondary to my treatments with Cisplatin so can't comment on the ability to work around the chemo schedule.  I guess everyone's treatment plan is different and capacity to juggle that with a work schedule, especially now that things are starting to open up and more people will be returning to the office environment. I'd think, if you have a remote work schedule or can negotiate one that would make things much easier to deal with. 

New CA upcoming in two weeks for me, then Cycle 8, then a scan to determine if I need to go to Cycle 9 or I"m done (for now).  Keeping my fingers crossed we've achieved what we set out to. I have tracking in that direction.  Good luck with your treatments....let's keep that CA number sliding all the way down, eh. 
 

Donnybrook

@tdubs17 - Great news that your CA is going down so rapidly!  It gives me hope.  I haven't had a CA test for several weeks but have one next week so I am going to stay positive after your success.

Edmonton does seem to have a good medical system.  My sister works in an Edmonton hospital and has all good things to say.

Good luck!

Donnybrook

A general question for anyone on Gemcitabine:

I have been experiencing a distended stomach and incredible heartburn.  I can only eat half meals and not often as I feel so full and my stomach gets quite firm.  I look like I am pregnant which would be funny except that I am 59!  Okay, it is sort of funny. 

Is this a common side effect?  My oncologist didn't seem to think it was a big deal but I will be questioning her very closely next week.  She suggested a few weeks ago that I follow up with my Internist as I have severe ulcerative colitis as well, which has been quiescent for the most part since I've been on cancer treatment.

Any insight would be appreciated.

tdubs17

Donnybrook said:

A general question for anyone on Gemcitabine:

I have been experiencing a distended stomach and incredible heartburn.  I can only eat half meals and not often as I feel so full and my stomach gets quite firm.  I look like I am pregnant which would be funny except that I am 59!  Okay, it is sort of funny. 

Is this a common side effect?  My oncologist didn't seem to think it was a big deal but I will be questioning her very closely next week.  She suggested a few weeks ago that I follow up with my Internist as I have severe ulcerative colitis as well, which has been quiescent for the most part since I've been on cancer treatment.

Any insight would be appreciated.

Hi

I have been getting some heartburn lately as well, but does go away eventually.  My only really side effect is the fever and chills the first night after chemo.  Xtra Tylenol helps and I'm fine.  Then a couple days after exhausted.  I also am feeling a bit more bloated than usual.   Yes eating small meals is the ticket.   Like only bites sometimes.  My CA was 22000 its now down to 11000.  Yea its incredibly high still...but going in the right direction.  Next CT is July 28.  I do really really enjoy the week off thats for sure!  Treatment once a week is...ummm a lot.  Blood test Tuesdays and chemo Thursdays.   Good lick Donnybrook.  Let us know how it goes!

Donnybrook

Thank you for the info.  Halving your CA125 is amazing!  
I live for the week off even though I always end up with some kind of appointment but it isn't Chemo.  Never thought I would be saying those words.  LOL