Chemo (Taxol) & Immunotherapy

nspired36

 

Hi!

 

Sorry if this came up twice. I cant see that my 1st discussion posted.

I was wondering if anyone did standard chemo along with immunotherapy (sp?) I have agreed to be part of the I Spy study that incorporates chemotherapy along with immunotherapy, which is supposed to be very effective and also helps to boost the immune system throughout treatment (thus less servere side effects). So, I was hoping to hear from someone who has this course of treatment and learn how it went.

 

Also, since I will also be taking Taxol, does anyone have comments on SE and ways to manage those?

 

 

 

Thanks and hopefully you all have an awesome weekend!

 

Apaugh

wow

I am diabetic, so I had some neuro issues prior to treatment.  The A/C chemo had fired that up and fried my feet 2X so they could not give me Toxel.  However, I know there are many on here that have and I am sure there is some past post about it.    I hope someone on here can help you.

Your very brave for participating in a study to help future cancer patients.  Please keep us posted on how it is going. 

Hugs,

Annie

nspired36

Thanks

My MO was very excited about the study,  so I'm excited to be part of it.  She says is been around for several years with good results.  I did search Taxol in here and there were several helpful threads 

meschellejensen

Sorry

Sorry, I posted my reply in the wrong place!

HapB

nspired36 said:

Thanks

My MO was very excited about the study,  so I'm excited to be part of it.  She says is been around for several years with good results.  I did search Taxol in here and there were several helpful threads 

Nspired

Hi, my question would be whether you will be getting the standard of care treatment. AND the immunotherapy?  the breast cancer you have is pretty advanced, right? I only say this because when my Dad was alive he agreed to go on a trial and it as it turned out the drug never got approved by the FDA because there were so many Adverse Events, stroke. My dad was healthy and in his 70's and had a stroke from the meds. There was a coass action suit, but what good is money when you can't walk?  

Before I signed any consent form for a trial, you need to make sure of some things:

Is this a randomized study in which some patients will blindly get a placebo or an alternate drug?

is the treatement that you will be getting the accepted standard of care for your particular cancer? Does it follow the NCCN guidelines? (You can look that up)

What phase trial is this? The earlier phases tend to be more risky because they have not discovered all or the potential side effects or adverse events. 

What are the known risks so far? 

 

Researchers rely on these trials to further knowledge and to get grants to continue the search for a cure. just be careful. 

 Also I have had one dose of Taxol.  A lot of people do very well on Taxol, but there are also a lot of people who have mild to severe allergic reactions. You won't know which group you are in until you try it. Some people call it chemo light and it is given in combination with another chemo. What other chemo is being mixed with it for your treatment?

nspired36

HapB said:

Nspired

Hi, my question would be whether you will be getting the standard of care treatment. AND the immunotherapy?  the breast cancer you have is pretty advanced, right? I only say this because when my Dad was alive he agreed to go on a trial and it as it turned out the drug never got approved by the FDA because there were so many Adverse Events, stroke. My dad was healthy and in his 70's and had a stroke from the meds. There was a coass action suit, but what good is money when you can't walk?  

Before I signed any consent form for a trial, you need to make sure of some things:

Is this a randomized study in which some patients will blindly get a placebo or an alternate drug?

is the treatement that you will be getting the accepted standard of care for your particular cancer? Does it follow the NCCN guidelines? (You can look that up)

What phase trial is this? The earlier phases tend to be more risky because they have not discovered all or the potential side effects or adverse events. 

What are the known risks so far? 

 

Researchers rely on these trials to further knowledge and to get grants to continue the search for a cure. just be careful. 

 Also I have had one dose of Taxol.  A lot of people do very well on Taxol, but there are also a lot of people who have mild to severe allergic reactions. You won't know which group you are in until you try it. Some people call it chemo light and it is given in combination with another chemo. What other chemo is being mixed with it for your treatment?

HapB

Yes, I am getting the standard of care (the immunotherapy is an addition to the standard). So I will still  do the 12 weekly Taxols, followed by 4 bi-weekly A/C treatments. This is study is in Phase III and has been around for 8 years. I will check out the NCCN guideline, I have a couple of weeks to do some research and I can opt out at anytime. They have found that adding immunotherapy, reducing the risk of reaccurances in advanced breast cancers like mine.

 

Thanks for your comments and suggestions, i will defintely do my research!

HapB

nspired36 said:

HapB

Yes, I am getting the standard of care (the immunotherapy is an addition to the standard). So I will still  do the 12 weekly Taxols, followed by 4 bi-weekly A/C treatments. This is study is in Phase III and has been around for 8 years. I will check out the NCCN guideline, I have a couple of weeks to do some research and I can opt out at anytime. They have found that adding immunotherapy, reducing the risk of reaccurances in advanced breast cancers like mine.

 

Thanks for your comments and suggestions, i will defintely do my research!

Nspired

Sounds like you are on it. You can read the phase 1 and 2 trials and see any changes that they have made along the way as well as the adverse events. Is this study being done at Mayo. You know, they are in one of the top 2 cancer hospitals in the USA, which says a lot. 

I wonder on a Phase 3 trial, does your insurance pay for the immunotherapy, or does the study pay for it. Often, insurance companies won't pay for treatments that are beyond the scope of the standard of care. 

sounds like a very worthwhile and needed study!!!! 

nspired36

HapB said:

Nspired

Sounds like you are on it. You can read the phase 1 and 2 trials and see any changes that they have made along the way as well as the adverse events. Is this study being done at Mayo. You know, they are in one of the top 2 cancer hospitals in the USA, which says a lot. 

I wonder on a Phase 3 trial, does your insurance pay for the immunotherapy, or does the study pay for it. Often, insurance companies won't pay for treatments that are beyond the scope of the standard of care. 

sounds like a very worthwhile and needed study!!!! 

 

 

 

 

Yes, I chose Mayo and also chose to double my commute because they are one of the best cancer hospitals in the country! This is a nationwide study, but here in Minnesota the study is being conducted at Mayo and the University of Minnesota Masonic Cancer Center, which is also very good. The study pays for all of the cost associated with the study, so it wont go through my insurance. Another part of the study is diet. So, they will give me a diet plan to follow if I chose to (i will need to pay for the food). They also will do some cryotherapy. Taxol has been known to cause temporary and sometimes permanent neuropathy. the cryotherapy, basically I will be putting my hands in feet in cold packs for part of the time that I’m getting my chemo IV, its supposed to reduce the occurrence of neuropathy. So far, I see these an enhancement to treatment, but I am still researching everything. i am kinda ready to just get started so I can be done with chemo, surgery, radiation etc...

 

 

 

peony

That sounds like an excellent

That sounds like an excellent trial to take part in.  Hope it works out for you and in general. I had a UTI and an upper respiratory infection while in chemo and worse of all, i picked up a MERSA infection that I will always have.  I hope the ice packs on your hands and feet work out; neuropathyland is not a great place to be. Sounds like your journey is going well so far.  Keep us informed on your progress. Best wishes.

nspired36

Sorry to hear about the MERSA

Sorry to hear about the MERSA. I start my 1st treatment on July 5th. I will post updates about my complete treatment plan, as well as how things are going. 

HapB

peony said:

That sounds like an excellent

That sounds like an excellent trial to take part in.  Hope it works out for you and in general. I had a UTI and an upper respiratory infection while in chemo and worse of all, i picked up a MERSA infection that I will always have.  I hope the ice packs on your hands and feet work out; neuropathyland is not a great place to be. Sounds like your journey is going well so far.  Keep us informed on your progress. Best wishes.

Icing hands and feet

I asked the chemo nurse about icing hands and feet and she said that she had never heard of it????? I had one dose of Taxol + H so. far.  

Apaugh

ice on feet

I put ice on my feet and hands to help out with the neuropothy.  It makes them feel good.

HUG,

Annie