Anyone on Gemcitabine with Abraxane? How long? Effective?

Posted by helenar @helenar, Aug 17, 2022

Hi, I'm Helena from South Africa. I have been diagnosed with PC, stage 4, in March. Tumour between body and tail and with one lesion on my liver.
I have been on Folfirinox for 3months, but it had no effect, allthough my markers came down from 3091 to 357, the tumour increased in size and there is another lesion on my liver.
I have started Gemcitabine with Abraxane.
Has anyone been on Gemcitabine/Abraxane?
If so, how long and how effective is this treatment?

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@gamaryanne

@scalettasandy
We have all been where you are. When I was diagnosed stage IV I had a busy real estate group, lots of volunteer activities, and tons of travel and fun times planned. It shook me to the core.
Then I knew I had a choice. I could choose joy in every day things or I could drown in “self”.
I chose joy but also to know and learn everything possible I could about my situation.
I looked at the survivor rate, which is a broad term as all cases are not the same. 12% was not encouraging-until I did the numbers! 12% is thousands of people! Why couldn’t I be one of them? Maybe I will or maybe I won’t, but I am 23 months into this and thriving. We are all different, but I still work and find joy in helping others. There is always someone among us that has a worse situation. Often I feel helpless to make a difference, but sometimes just being there for someone or writing a note does. It certainly helps me!
Sleep is healing! Focus with your doctor on some good sleep and ways to get protein. You can be a better you. If they aren’t helping go elsewhere!!
Xoxo

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Live alone, 62, can’t drive at all anymore because of all the meds so I’m stuck here in a little town in wi and no family nearby. Rides are getting more and difficult to find. I have to order everything in even groceries. Constant diarrhea if I try to eat even a biscuit or apple. None of the meds help with that either. I panic when I do leave every other week for the 4 hour round trip drive to get chemo every other week so afraid to leave my four walls and toilet. I just can’t figure out how most of you keep going. How you drive to and go to work, shop, volunteer, etc
I’m a prisoner in my own home. Sorry to sound like such a sad rediculous person feeling sorry for herself but I don’t know how to keep going on. Can’t eat, yes, I have Creon and doesn’t help at all. I’m just turning to be a walking skeleton!

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@scalettasandy

So do you get those on Amazon and lug a cooler to your chemo appointments and put the gloves and feet things on before they start chemo? I also can’t drive any longer to get to extra appointments like acupuncture. If I could get to one. What do you do google acupuncturists that can work to prevent neuropathy? I live in a tiny town so I doubt there’d be anyone reliable but maybe I could learn how to use Uber or something if we even have it here

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I believe I saw the gloves and feet things on Amazon & yes, the lady who had them brought them in a cooler. She could get the feet and one hand on easily but needed help getting the 2nd glove/mitt secured. I found the Acupuncturist through the VA clinic community referral in our small town. We do have to go 45 miles to Savannah for my treatments. (I started 2x a week and now going 1x a week due to fatigue.) I have googled acupuncturist close to me and would have tried the closer one if the phone ever took a message or a person answered. I would just ask if they had experience with chemo induced neuropathy. The doctor I see has worked with neuropathy patients. It is worth a try. Some say it works & others say it did not help.

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@scalettasandy

I know this is a stupid question but is there any way to prevent getting neuropathy? I’ve only had 3 treatments so far and just panic at the thought of having that happen. I know, better than dying but if there’s any way to avoid it please help! Next infusion is Monday.

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Re neuropathy, talk to your oncologist about skipping the oxaliplatin after some treatments. In my case, my MD dropped oxali from my infusion after 8 rounds of chemo. He said years ago, when he started practice, the approach was to continue treatment come h-e-double-hockey-sticks or high water until the patient couldn't stand it anymore. But by then, the neuropathy was permanent and debilitating. My MD said he's convinced he crippled (his word) some patients by persisting with the oxali. So now, he routinely drops it from the Folfirinox after 8 rounds. I had developed a little neuropathy in my hands and throat, but it has almost entirely resolved.

I read your posts farther down about the challenges with your isolated location. We are fortunate that we live in a large city and only 15 minutes' drive from my infusion site and MD offices. Still, I appreciate your worry. Is there any way you can organize--or get a friend or church or workplace to organize--a group of people who can help you with transportation, meals and the like? If people rotate through a schedule, it wouldn't overload anyone, but it would help you with constant support that you can count on. Another idea is to have a relative or relatives come visit you for several days at a time; while they're there, they could take you to chemo, stock groceries, run errands, do laundry, etc. The last option would be to move closer to your chemo site/MD offices. That is not ideal and would require a lot of work, and you'd give up everything you know in your small town. But it may be something to consider.

Finally, re the diarrhea, if you have it so badly that you fear leaving your house, talk to your MD and get some medication to help control it. My MD prescribed Lomotil and (over the counter) Imodium, which were to be alternated on my challenging days.

I hope some of that helps!

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Oxiliplaton. I’ve never heard of that. I just go in get hooked up and a nurse comes by Galway through to change the bag to 2nd med.
I had an allergic response to folfirinox so I only get the the 2. Gem/abraxine. What is the oxiplatin for or is that just automatically put in with one of the other gem/abraxine?
I have Lomotil and Imodium and another rx for it but still happens with anything I eat. I swear 3-4 times comes out from the 1 pbj sandwich or 1 cup stew that I eat. I’m amazed at how much everyone seems to know about this disease! I’ve only seen my oncologist the 1st time I went in. He said you have pancreatic cancer that’s spread to liver, lymph nodes & a lung. Get this chemo done every other week. Sure wish there was someone closer besides breast & prostate cancer Drs!

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@199

I believe I saw the gloves and feet things on Amazon & yes, the lady who had them brought them in a cooler. She could get the feet and one hand on easily but needed help getting the 2nd glove/mitt secured. I found the Acupuncturist through the VA clinic community referral in our small town. We do have to go 45 miles to Savannah for my treatments. (I started 2x a week and now going 1x a week due to fatigue.) I have googled acupuncturist close to me and would have tried the closer one if the phone ever took a message or a person answered. I would just ask if they had experience with chemo induced neuropathy. The doctor I see has worked with neuropathy patients. It is worth a try. Some say it works & others say it did not help.

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I saw those gloves and foot things too on Amazon. Do you happen to know if you wear them hoping it’ll prevent neuropathy from happening or do you wear them if it starts?
My chemo is the Gem/Abraxine. I’ll just be getting my 4th treatment on Monday. I keep reading about all the terrible side effects and just general horrific things that are going to happen so if I can prevent that neuropathy maybe I can save myself one of the things coming. But like I said I don’t know if I should order the supplies or if I’m just going to have it happen because it happens to everyone? Probably not explaining myself

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Speaking from my dad’s experience- the neuropathy was much worse when he was on the folfirinox. But I will say- when he went on the gem/Abrax his chemo symptoms worsened. Much more fatigue and nausea- but minimal neuropathy. He handled the folfirinox treatment much better.

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@scalettasandy

Oxiliplaton. I’ve never heard of that. I just go in get hooked up and a nurse comes by Galway through to change the bag to 2nd med.
I had an allergic response to folfirinox so I only get the the 2. Gem/abraxine. What is the oxiplatin for or is that just automatically put in with one of the other gem/abraxine?
I have Lomotil and Imodium and another rx for it but still happens with anything I eat. I swear 3-4 times comes out from the 1 pbj sandwich or 1 cup stew that I eat. I’m amazed at how much everyone seems to know about this disease! I’ve only seen my oncologist the 1st time I went in. He said you have pancreatic cancer that’s spread to liver, lymph nodes & a lung. Get this chemo done every other week. Sure wish there was someone closer besides breast & prostate cancer Drs!

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I believe the oxiliplanton is party of the folfirinox 5 fu treatment. My dad was on that for the first 3 months of his journey. He handled it pretty well.

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@ro0891

Speaking from my dad’s experience- the neuropathy was much worse when he was on the folfirinox. But I will say- when he went on the gem/Abrax his chemo symptoms worsened. Much more fatigue and nausea- but minimal neuropathy. He handled the folfirinox treatment much better.

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Unfortunately I had a reaction to it and it sent me to the ER for awhile so he took it off my chemo treatments

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The icing and compression are supposed to help prevent neuropathy from starting or worsening, so it should benefit you to start whenever you can, and do it at every treatment.

The theory is that the chemo damages nerve cells in your periphery (fingers & toes), and since ice/compression can reduce blood flow, applying it to those peripheral areas during an infusion reduces the amount of chemo drug carried to those nerve cells.

Depending on how long your drive to the infusion center is, you might freeze the gloves and socks before you leave home. Cooler or not, when you arrive at the infusion center, you can ask them to store them in their freezer while you get a blood test, meet with the doc/nurse/PA, and get your pre-meds infused. Then they can bring the socks/gloves to you when you're starting the drugs that cause neuropathy.

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Folfirinox is one standard-of-care combination of 4 drugs:
FOLinic acid
Flurouracil
IRINotecan
OXaliplatin

Gemcitabine (Gemzar) is the primary drug in the "other" standard of care.
Gemcitabine is often combined with Abraxane (nab-paclitaxel) and sometimes with Cisplatin.

There are 3 common platinum-based agents used in chemotherapy: Oxaliplatin, Cisplatin, and Carboplatin, with worst side effects pretty much in the same order.

Abraxane, Oxaliplatin, and Cisplatin are well known for causing peripheral neuropathy. Abraxane adds hair loss as a common side effect, and Oxaliplatin is notorious for causing cold-sensitivity.

The dose of any ingredient in any of the combos above can be reduced or eliminated if you're having bad reactions to it.

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@scalettasandy

I saw those gloves and foot things too on Amazon. Do you happen to know if you wear them hoping it’ll prevent neuropathy from happening or do you wear them if it starts?
My chemo is the Gem/Abraxine. I’ll just be getting my 4th treatment on Monday. I keep reading about all the terrible side effects and just general horrific things that are going to happen so if I can prevent that neuropathy maybe I can save myself one of the things coming. But like I said I don’t know if I should order the supplies or if I’m just going to have it happen because it happens to everyone? Probably not explaining myself

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You explained what you wanted to well enough. I do not use them. I saw another patient with them & she got them from another patient who no longer needed them. She thinks they helped her. I just had my 40th Gem/Abraxane treatment. The neuropathy started slowly at first and some days it was really wicked feeling like someone was driving roofing nails into my toes, feet or ankles. Other times it was like something was sucking or scraping the bone marrow out of my lower legs. I am trying the acupuncture & although it seems to help, the reversing process is no picnic either as sensations try to return. But I look at it this way: At least I am still here to complain about it. I find that pain meds like Tramadol and Percocet help; just do not wait too long into the pains to take them. I tried gabapentin and lyrica but they did not help. They have side effects too which were really bothering me.
I consider myself lucky in that I have not had much trouble with nausea and vomiting. I still eat most of the foods I did before. I did gain weight, but that can be a side effect of the gemcitabine.
I cannot tell you if those mitts will help or not but they might. Keep up the fight! I am now in radiological remission & continuing treatment at least until the next CT in December.

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