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Deciding treatment...do I take the “red devil”?

Deciding treatment...do I take the “red devil”?

Posted by Kaymoose on Dec 1, 2019 5:18 am

My oncologist gave me two options for chemotherapy...one that starts with the “red devil” and the other one is just 12 weeks of Paclitaxel.  I’m trying to figure out if I should take the easier treatment without the red devil.  I’m wondering about anyone who has had breast cancer treatment with just Paclitaxel and no AC (red devil).  I’m also wondering if anyone was given a choice of their treatment and not just told what it was going to be.

Re: Deciding treatment...do I take the “red devil”?

Posted by Cynthia Mac on Dec 1, 2019 8:17 am

Tagging Lianne_adminCCS‍ , ashcon‍ , Runner Girl‍ And Kims1961‍ 

Re: Deciding treatment...do I take the “red devil”?

Posted by Runner Girl on Dec 1, 2019 9:21 am

Hello Kaymoose‍ ,

Thank you for the tag Cynthia Mac‍ ,

My chemo drugs for my breast cancer were different from yours.  But I did have trouble with them so let me explain.  My first chemo was carboplatin and docetaxal,  my side effect from this was terrible pain in my ears.  I reported this to my oncologist, so my second chemo the carboplatin was reduced to 80%, with the full dose of docetaxal.  After this I ended up having to stay home from work one day as my inner ear was affected to the point that my balance was gone.  It got better in a couple of days.  Reported this so for my third chemo we swapped out the carboplatin for cyclophosphamide.  No ear trouble with this one, but 4 hours after I had it it felt like my chest was being crushed.  Reported this and my last three chemo treatments were docetaxal only, which I tolerated really well.

You could try the red devil and if you can't tolerate it go with just the other one.  You really need to communicate with your team so they know how your body is reacting.  

Runner Girl

Re: Deciding treatment...do I take the “red devil”?

Posted by ashcon on Dec 1, 2019 10:27 am

Hi Kaymoose‍ ,

I'll be honest... This is the first time I've heard of the option for one or t'other when it comes to the AC T combo: doxorubicin hydrochloride (Adriamycin); Cyclophosphamide; paclitaxel (Taxol)).

I had all three - no choice. My breast cancer was aggressive, triple negative, invasive ductal carcinoma with several nodes positive for cancer. 
What is the type and histology of your cancer? 

If the efficacy of both the 'red devil" and the Taxol is the same in your case, it may just be a case of determining which would give you the least side effects, yes? 
This is worth asking your oncologist about.
Also:
  • Do you have any other health conditions or take any other meds that may be a contraindication for one treatment or the other?
  • I'd also ask your MO if you can switch to the other, if the first one is not working for you. 
Let us know how this pans out. I'm sure others would be curious to learn from what you end up doing!

Ashcon (Ann) 

Re: Deciding treatment...do I take the “red devil”?

Posted by ACH2015 on Dec 1, 2019 11:07 am

Kaymoose‍ 

I saw your post and looked up the drugs involved via a Canadian Cancer Society Link I'll share here - Chemotherapy for Breast Cancer.

Along with  the suggestions from ashcon‍, "(I'll be honest... This is the first time I've heard of the option for one or t'other when it comes to the AC T combo: doxorubicin hydrochloride (Adriamycin); Cyclophosphamide; paclitaxel (Taxol))".   I think its well worth ensuring you have all of the required information in making a decision for your systemic treatment. See below as I've quoted info from the link:

Early stage or locally advanced breast cancer

Doctors usually offer chemotherapy to treat early stage (stages 1A, 1B and 2A) breast cancer with a high risk of recurrence or locally advanced (stages 2B, 3A, 3B and 3C) breast cancer. Chemotherapy for these stages of breast cancer is generally given as a combination of several drugs because research shows that giving them together is more effective than giving each drug alone.

The following combinations of drugs may be offered. Most of these drugs are given by a needle in a vein (intravenously):

  • AC-T – doxorubicin (Adriamycin) and cyclophosphamide (Procytox) followed by paclitaxel (Taxol)

Advanced breast cancer

Advanced (metastatic) breast cancer means that the cancer has spread to other parts of the body. It is stage 4 breast cancer.

Doctors often use one chemotherapy drug to treat advanced breast cancer because it causes fewer side effects than a combination of drugs. However, combination chemotherapy may also be used.

There is no standard drug or drug combination for advanced breast cancer. Chemotherapy is given as long as the cancer responds to it and the side effects do not cause problems. Once the cancer no longer responds to the treatment, doctors may offer a different drug.

The following single drugs may be used:paclitaxel (Note there is no mention of AC T being an alternative singular drug as a comparison or choice)


FYI - I've just cut and pasted these portions from the link to high lite what is currently stated and  available on the CCS website regarding this subject. Read through the entire link, and you will see the contradiction in what you reported from your specialist and what is suggested from the link, and ashcon‍,  Ann's experience. Usually, there is cohesiveness between sources.

Its certainly an issue that needs to be clarified, and again there may be new information or information that is specific to your case that is allowing for your "choice", but ensuring you have all the facts always helps you make the best decision for your care and treatment.

Please keep us in the loop and let us know what you discover in follow up.

ACH2015


 

Re: Deciding treatment...do I take the “red devil”?

Posted by Kims1961 on Dec 1, 2019 12:39 pm

Kaymoose‍ You have some excellent responses here so have little to add except my own experience.

I wasn't given a choice either,,,started with 3 rounds of the "red devil" - which although somewhat challenging, I was able to manage with some really good anti-nausea meds.  I told them they had to change the name from Red Devil....to Red Angel - trying to change my mindset of something that is evil to something that maybe helping my body.....   :)

I then had 3 rounds of the docetaxol - it was tough in a different way - mostly bone pain.

The key was communication with my team - there are remedies to help manage the side effects or dosage decreases.  Ask what would they do in your situation? or why the choice?

Good question - if you can let us know how this works out that would be awesome!  kim

 

Re: Deciding treatment...do I take the “red devil”?

Posted by FireflyNS on Dec 2, 2019 7:11 am

Hi Kaymoose‍ , I had three cycles of FEC (the E being the red devil) and am finishing my third cycle of abraxane (a different form of paclitaxel) next week. I had a far easier time on the red devil. I felt good, had decent energy, and all of the side effects were minor. Abraxane has been kicking my butt - zero energy, body pain, neuropathy in my hands and feet. my nurse said that’s basically the opposite of how most people find it. I think it’s hard to know how your body will react until you try it. Be really pro active about side effects - I’ve found my medical team really cares about doing what they can to make me comfortable. Good luck!
 

Re: Deciding treatment...do I take the “red devil”?

Posted by EmmaJay on Dec 2, 2019 2:07 pm

I had 6 rounds of R-CHOP chemo for my aggressive Non-Hodgkins Lymphoma. With each round I received two bags of "Red Devil" injected into my stomach. Happy to say that I'm 20 months in remission. I found that drinking a lot of water prior to chemo helped with the immediate effects. Good luck with your journey.
-MJ

Re: Deciding treatment...do I take the “red devil”?

Posted by Essjay on Dec 2, 2019 7:32 pm

Hi Kaymoose‍ i had the ’red devil’, four doses plus cyclophosphamide. And I had Paclitaxel. The ACT regime dose dense. I took this option because it was the one that gave me the best chance of dealing with my cancer. Other options didn't give me as good a chance of seeing the back of it, and it was the option that my oncologist recommended. I was 49 at diagnosis and I wanted to give myself the best chance of another 30 years...i saw the time in chemo as an investment.

There's side effects to all chemo, and the medical staff will watching out for them, checking how your body is coping, and adjusting things as necessary. Talk them, tell them everything. I battled headaches, constipation, diarrhea, fatigue, aches and pains, and neuropathy, but I got through it, and things have got better.

It's your body, your cancer journey, none of us can tell you what to do, and whatever you decide is right. Essjay xx

Re: Deciding treatment...do I take the “red devil”?

Posted by mamaduck on Dec 3, 2019 4:42 pm

HI Kaymoose‍ 

I was diagnosed with TN invasive ductal carcinoma in June. I just completed 7 out of 8 chemo treatments. I had the ACTG protocol. My first four rounds of the "red devil" weren't that bad. The first round, I didn't take enough anti-nauseous meds, but once I realized I needed to stay on top of it better, I was fine. So yes, you will lose your hair (my Dr told me that almost all of the chemo drugs make you lose your hair), you will be tired so you need to take a nap when you need it, you might lose your appetite (I was told just eat what you can, don't worry about what it is - I drank a lot of smoothies).  I developed an aversion to water, it tasted like gasoline, so I drank a lot of milk, soup, Gatorade, hot water, whatever I could. I am still having issues with water. 

I also started getting some peripheral neuropathy but it was minor. My doctor reduced my dosage of chemo.  I also had some body aches but it was manageable with Tylenol. Overall, I just felt like I had a minor flu but a number of the people are very active through out their chemo. I am still off work and am thankful to be so. I think if you have a job with lots of sick days and a supportive boss, it's fine. 

I had my first Paclitaxel treatment and was fine, my second one, I had an allergic reaction so they had me take some meds before and they tried again a few days later but I still had the allergic reaction. My dr had to apply for me to get a really expensive med, nab-Paclitaxel (abraxane). It is a lower dose so I had to go every week and three weeks is equal to one round. I had to stop the chemo after my third round. The neuropathy is getting worse. I am a massage therapist and not only do I need my hands, I have to stand so both my doctor and I felt it best to stop. Hopefully it won't be permanent. But my doctor was saying that the most important chemo rounds were round 1 & 2 of the "red devil" and 5 &6 of the Paclitaxel/Abraxane so I have reduced my chances of the cancer coming back by 1/3. I am having a double mastectomy in January which also reduces the chances by another third. 

As one of the other ladies have mentioned, you do what feels right for you. But, I also think that it's how you chose to think about it. Yes, they are putting a toxic poison into you but that's to kill the cancer, you are stronger then those tiny, little cancer cells. This whole process, which sucks, the whole thing just sucks, this is just what you do to get back to you and your life and everything that you value in that life. It is 6-12 months of appointments you don't want to have but what you do so you get you back. 

Good luck and let us know how you do. 
mamaduck

Re: Deciding treatment...do I take the “red devil”?

Posted by Treepeo on Dec 3, 2019 5:09 pm

Hi Kaymoose‍,

I was not offered a choice, either.  I did 8 rounds of AC T.  Personally, I did not find the Red Devil bad at all.  The anti-nausea drugs I was given worked beautifully.  It was the Taxol that gave me more problems.  I developed neuropathy in my hands and feet.  I have also lost one of my big toe nails.  But overall, chemo was not that bad.

Having said that, I would speak to your oncologist to see what he or she would recommend, and why.  It seems unfair that he would put this kind of decision on you, when he is supposed to be the expert.

Re: Deciding treatment...do I take the “red devil”?

Posted by Kaymoose on Dec 3, 2019 8:32 pm

Thanks everyone.  I appreciate all the advice and kind words.  I start chemo in a week and for now I’m trying to enjoy time with my family and eating A LOT!  

Re: Deciding treatment...do I take the “red devil”?

Posted by Mammabear on Dec 4, 2019 12:02 pm

i had no choice 5 years ago. I am triple positive. I heard from a friend that her triple positive she had a choice and based on the research took the 12 week taxol option. Red devil is TERRIBLE. All the anti-nausea drugs couldn't stop the nausea for me. But that is not to say that weekly taxol won't take its toll. It will have a LOT of fatigue (just finished 3 months of weekly taxol with the return of my cancer in my liver). If the outcomes are the same go for the shorter (easier) treatment. They don't call it the 'red devil' for nothing.