Shortage of Chemo drugs: I just thought... - SHARE Metastatic ...

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Shortage of Chemo drugs

Fiercefighter13 profile image
33 Replies

I just thought it would be wise to post that in the United States at the moment, and probably world wide, there is a shortage of key chemo drugs at this time. Platins are short and being judiciously given when doctors can get them. Xeloda (Capecetabine) is in short supply right now as well. For anyone using chemo agents, keep in close contact with your doctors and pharmacies as to avoid having to skip doses due to non availability!! Take care! Here is a list of drugs in shortage right now from Drugs.com it is at drugs.com/drug-shortages/

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Fiercefighter13
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13plus profile image
13plus

Gee this is not good news. I have a feeling I'm going to be switched to xeloda after my next scans next week. Thanks for sharing

Fiercefighter13 profile image
Fiercefighter13 in reply to 13plus

You're welcome. What is going on with chemo drugs right now is very unsettling. Let's just hope and pray there is enough and they start manufacturing more.

SwedishSissi profile image
SwedishSissi

I have had issues getting Ibrance in Sweden during the summer. Now keeping stock, as they last about 2 years.

Djd60 profile image
Djd60 in reply to SwedishSissi

How do you receive more than a box monthly, my Insurance won’t cover any treatments sooner then the monthly timeframe allowed, they deny it , just curious how your keeping stock of more than amount allowed each month, thank you !

in reply to Djd60

I'm in the UK, Ibrance is only issued by the hospital. I have to have a four weekly blood test on my week off before the oncologist will let me have another month's supply. So I wouldn't be able to keep a stock of it either.

Liessie2014 profile image
Liessie2014 in reply to

Hi , I too am In the UK a place called Middlesbrough the North East, of England. I am like you , I get my Ibrance and Letrozole from the hospital every month , after regular blood tests every 4 weeks , if my white blood cells are too low I have to stay off the Ibrance , usually for a week until they go back to normal , It would be worrying if they ever say we haven’t got any medication to give me , I haven’t even thought of that, I am really lucky 🍀 fingers crossed everybody gets there medication , we all have enough to worry about

mkrienke55 profile image
mkrienke55 in reply to Liessie2014

What is the white blood cell count that causes concern ? Just curious as I am new to Ibrance and this whole situation.

TammyCross profile image
TammyCross in reply to mkrienke55

You should post this separately and you will get a ton of informed replies. I haven't had this problem but you will see that many have and understand it better than I do. Basically, the cancer meds destroy cancer cells as well as needed healthy cells. If your white blood cell count drops too low, you are prone to infection. Usually they stop the med until white blood cell gets back to a healthy and protective level.

Liessie2014 profile image
Liessie2014 in reply to mkrienke55

Hi. I have had an infection a couple of times due to low white blood cells it is called neutropenia. I hope I have spelt it correct lol, , I make sure I try and avoid anybody who has a cold or virus and especially Covid , and I had to have my Ibrance dose lowered from 125. to. 100. because of the low white blood count , I use antibacterial wipes quite a lot , I am getting my hand gel ready for people coming into my house as the winter approaches my family and friends totally understand they always make sure they use the handgel , I don’t want to sound like I am a cleaning freak , I totally am not lol , but I am careful about washing fruit and veg really well , I didn’t really think about germs as much before my diagnosis , but now I am more careful , I don’t want to worry you , honestly I have been ok I have been on Ibrance for 3 years and doing fine , 🤞

mkrienke55 profile image
mkrienke55 in reply to Liessie2014

What was your count if you remember when they lowered you to 100 mg

Liessie2014 profile image
Liessie2014 in reply to mkrienke55

Hi , I am sorry , but I can’t remember, if I remember , I will get back to you

SwedishSissi profile image
SwedishSissi in reply to Djd60

I get 3 boxes at a time, as I can still travel, so I don't want to stay at home. I take my blood-tests in whatever country I am in, every 3 weeks (and extra if I don't pass). I just need to show a plane ticket at the pharmacy to get the extra ones. I also mix 75 & 100mg, which means I need to make sure I have spare of each depending on test results. But I had a few scary months when the whole country was out of stock, so I told my doctor that she has to make sure I don't run out.

Fiercefighter13 profile image
Fiercefighter13 in reply to SwedishSissi

Good thinking! I try to stock up as much as possible given my insurance fills a few days early each month so it adds up.

Timtam56 profile image
Timtam56

wow. I have just gone through the whole test for the pic gene. And even though my CA markers are risking, luckily my scan were stable yet again. So I’m being kept on Ibrance and Anastrozole. But my next line would be either piqray or capcetabine. Good luck to all you beautiful people.

PS. I’m in Australia.

Fiercefighter13 profile image
Fiercefighter13 in reply to Timtam56

It's wonderful that you are staying on Ibrance/Anastrozole for now. I hope it lasts for a very long time for you! No drug shortages with these two. Wishing you the best!

Timtam56 profile image
Timtam56 in reply to Fiercefighter13

Thank you. I feel very lucky right now. Take care.

PJBinMI profile image
PJBinMI

I've not had any trouble getting Xeloda from a specialty pharmacy. I've had to have the dose lowered twice, am taking 1000 mg twice a day and semm to be stable. Next time I talk with the pharmacist, I'll ask about that.

Fiercefighter13 profile image
Fiercefighter13 in reply to PJBinMI

I have not had issues as of yet. The FDA's web page shows who is manufacturing it and some manufacturers just decided to stop making it. Other manufacturers are showing none available, and some have no ETA on when they will have it again. I think TEVA showed they would be releasing some in August. Some manufacturers are only supplying it to those who were already on it before the shortage. The web page has a lot of information. I've attached a shortage list from Drugs.com drugs.com/drug-shortages/ Hope this helps!

fancydog profile image
fancydog

Prayers for all to have the best medicines available if and when they are needed🙏❤️

Chamisa profile image
Chamisa

I did talk to my doctor a while back about this. Things change of course, but she said the supply of capecitabine (generic Xeloda, which I’m on,) isn’t a problem for their pharmacy AT THE MOMENT; it’s more the platinum-based drugs they have issues with.

It’s solely because these are “old” drugs and the drug companies don’t make an outrageous profit from then, so companies don’t want to make them ☹️.

Fiercefighter13 profile image
Fiercefighter13 in reply to Chamisa

It just stinks that many Pharma manufacturers are only interesting in making the new high ticket items! It's somewhat worrisome because many of these older meds work very well and are more affordable to so many, are in high demand, and work better for some people than the newer meds.

Eliactida1955 profile image
Eliactida1955

Plenty of xeloda here

Fiercefighter13 profile image
Fiercefighter13 in reply to Eliactida1955

Glad to hear that. Here is the web page to check on shortages: drugs.com/drug-shortages/

Hazelgreen profile image
Hazelgreen

According to NIH, "Platinum-based drugs cisplatin, carboplatin, and oxaliplatin are widely used for chemotherapeutic eradication of cancer. However, the side effects of platinum drugs, such as lack of selectivity, high systemic toxicity, and drug resistance, seriously limit their clinical application." It seems to me that you might be better off trying other interventions....

Fiercefighter13 profile image
Fiercefighter13 in reply to Hazelgreen

Xeloda does not do as much damage as the platins, but sometimes platins are necessary. Here is a list of current drug shortages, which includes the platins as well as capacetibine and other chemo agents as well. drugs.com/drug-shortages/

Eliactida1955 profile image
Eliactida1955 in reply to Fiercefighter13

I’m glad plenty here and my tumor marker went from 1736 to 351🎉🙏✝️

Fiercefighter13 profile image
Fiercefighter13 in reply to Eliactida1955

That's great!! It's worked miracles for me my markers went from 598 to 0! I just hope they keep making it and make enough!

Bettybuckets profile image
Bettybuckets in reply to Fiercefighter13

how long did it take to go to 0? Mine were 500 then dropped to 250?for a few months and now 150 range for 2 months…. It has been 8 months so far… I didn’t even know the markers could get to 0. How many months has that been for you?

Fiercefighter13 profile image
Fiercefighter13 in reply to Bettybuckets

Hi there! I had to look back on my calendar, I started taking Cape on January 13 of this year (a Friday the 13th no less, not that I'm superstitious). I have been on one week on, one week off 1500 mg a.m. and 1500 m.g. p.m. from the beginning. I did have a break from it in June, it turned into a total of 7 weeks off due to a two week stint off for a vacation, and then 5 weeks off on top of that to recover from Covid. My markers went by half within the first month on Cape, then halved again the second month, then each month took more leaps down and my last marker test was 4 weeks ago this coming Monday (doctor day every 28 days with blood work). It will be interesting to see where the markers are on Monday, or if there are any to see. Oh, also, when I went back on Cape after my 7 weeks off I lowered the dose to 1000 m.g. a.m. and 1500 m.g. p.m. because the worst side effect for me has been severe joint pain and foot pain. The skin my feet is fine, but my joints and feet hurt so bad I was almost crippled by it. Lowering the dose has helped with that. Unfortunately I can't take NSAID's because of the cancer in my stomach causing potential ulcers and I won't take opioids (saving those for the end). I'm hoping the markers are still non existent on Monday, but that remains to be seen. Your markers being stable is really great and if mine go back up but stay in a stable place I will be happy with that as well. It's when they start climbing by leaps and bounds that it gets unnerving.

Bettybuckets profile image
Bettybuckets in reply to Fiercefighter13

Hi FF- so interesting! Even if they go up I would not be too concerned and would attribute it to the break… better to see how things are in a month or more.. my feet a lot when I stand at parties- HFS I think but haven’t cracked. I also started around the first of the year.. i am on 2000 then 2500 per day with every other week off. I don’t think I can do 2500/ day.. it is just too hard on my feet. I can’t wear shoes at all just sandals as sneakers are too tight… even socks to be honest. I don’t know how I will get through winter. But I hope to be back in Nz for a another long visit..

Eliactida1955 profile image
Eliactida1955

that’s great!🙏✝️

CTGirl1962 profile image
CTGirl1962

If the drug manufacturers would get out of China, this would not be an issue, I’m certain. 🙏🏻🙏🏻🙏🏻

Fiercefighter13 profile image
Fiercefighter13 in reply to CTGirl1962

Agreed!

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