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Good morning Teal Sisters,

I see that word is getting out about Abraxane, an alternative for those who have experienced a severe reaction to Paclitaxel.  After my initial cancer diagnosis mid-2021 I was prescribed 6 cycles of Paclitaxel and Carboplatin.  During my first infusion I had an immediate negative reaction - stage 3 anaphylaxis.  Paclitaxel was stopped and for subsequent chemo cycles I was admitted to hospital for at least one, if not two, overnights for a very slow infusion over 12 hours.  Thankfully there were no further negative experiences, but I worry about the potential damage caused by the extended time period that the drug was being administered.

More recently my Oncologist removed a 10 cm mass on left ovary.  With pathology indicating cancer recurrence, he has recommended me for a further 6 cycles of chemo.  Due to my severe reaction 4 years ago I am "eligible" for Abraxane in place of Paclitaxel.  My first cycle is Wednesday, May 28th.  My fingers are crossed that all goes well, as the infusion period is 30 minutes and can be administered as a day patient.

I have also dusted off the two Ovarian Cancer Canada guides - By Your Side and Still By Your Side.

I am very grateful for everyone in the medical and research community, as well as my supporters near and far.  Together we are making things better for all women who are diagnosed with this disease.

Be strong!

- Wendy

WEMK  What an awful experience you had four years ago.   I had a reaction for the very first one in 2020, but not nearly as severe as yours.  Extra doses of steroids and Benadryl settled it down, the dosage was slowed and I finished that treatment.  The next five went without a problem.

This time, the plan was for the dosage to be slowed and it went fine for the first treatment, but on Thursday, I recognized the first sensation right away and called the nurse.  Abraxane wasn't available in 2020, according to the pharmacist, so this time there is an alternative and I went back on Friday for that.  It actually took 45 minutes for the infusion and, then, an hour for the Carboplatin, which also has to be administered more slowly, since this is my 3rd time taking it.

The after effects seem to be about the same, except that the pre-meds are one steroid and 2 anti-nausea tablets so I wasn't feeling as loopy when I was done Friday afternoon as I get on Benadryl.  I have my 'preventative' collection on my night table -- Tylenol, Tums, Imodium, and the anti-nausea medication prescribed by the pharmacist.  So far, so good.

Good luck with it all, Wendy.  

Thanks for your encouragement GGail.  All the best for a positive outcome and an easy journey.

This is also called nab-paclitaxel.
I have just finished 8 treatments without very little side effects so hope it works for you. My CA-125 has come down almost 200 points in 1 month so hoping it is doing its job.
Wishing you good luck on this new treatment.

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Hi Wendy,

My name is Cailey Crawford and I'm the VP, Programs and Policy at OCC. I am so sorry to read about your recurrence and the challenges you've had with chemo. You mentioned that you were dusting off your copies of By Your Side and Still By Your Side. I wanted to let you know that we updated our guides into one comprehensive guide last year and you can order your free copy at this link: https://ovariancanada.org/resources/support-resources 

I'm sorry to hear about what you have been going through and like you, my fingers are also crossed that all goes well.

Take good care,

Cailey

Hi Wendy, 

On my second infusion of paclitaxel I experienced a stage 4 anaphylaxis reaction. It was a terrifying though, admittedly, I don't remember most of it, just little flashes. 

After that reaction, I was immediately switched to abraxane for my remaining courses. It was great having a reduced infusion time but as it is nab-paclitaxel (just lacking all the fillers and additives in paclitaxel) the side effects were similar. 

I did learn that it is considered to be more effective, so I'll take that as a bonus. 

Thankfully, I've been NED for 2.5 years.

All my best for you! 
Lisa

Hi Wendy and friends,

I had a similar experience as you and others with Paclitaxel, and was switched to Abraxane (with a lot of fighting for it) for the remainder of my treatments. As Lisa mentioned, it was a shorter infusion, but again, I had the same side effects as the standard Paclitaxel. 

I feel strongly that we need to advocate for the use of Abraxane for folks. There are way TOO MANY stories of people having severe reactions, it needs to stop. It is so traumatic and scary, we shouldn't be put through more stress than we are already experiencing. 

With kindness,

Tiffany

I have been on Abraxane since March with no side effects. Also my CA 125 has just come down to the normal range since April 2022.
So glad I was given the opportunity to try this as all other treatments made me so sick and didn’t work

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Hi Tiffany,

I agree 100%.  With an estimated cost of an overnight stay in an Ontario hospital at $7,000, it is far more cost effective to administer Abraxane ($4,000 per dose).  I am truly grateful that my oncologist pursued this options for me. - Wendy 

I agree with you @TiffanyM!  Most of the Teal Teas I've attended women say they all reacted to Paclitaxel.
Why the health care field doesn't just switch over to Abraxane/nab-paclitaxel as the standard protocol is a mystery to me - why would you allow SO many side effects to happen to women when it's unnecessary??  This is a failure for patient-focused care IMO.  Health care field needs to listen to the patient experience and update protocols.

@Alwayslearning - do you know if the annual Oct conference will discuss this?  Why the health care field is not updating protocols to give patients nab-Paclitaxel instead of making women suffer consequences of side effects?
Could we / OCC do a petition or something to send to every Cancer Centre across Canada to appeal to patient advocates / people in charge to update the protocols to help us women?  I would sign it to show support.  Thanks for looking into this 

@DiamondGoddessYYC these are good questions indeed and you have my brain in a very curious state. I have no direct line to anyone organizing the conference however, I'm going to poke around and see what I can find out. Also as for petitions. Again not something I have any knowledge of but I know there are Teal Sisters who are patient advocates/partners. Maybe they are a voice for us in this area. I'm going to see what I can find out on this too. 

@DiamondGoddessYYC I have definitely had conversations with OCC about this concern, so they are aware of it with their advocacy work. 

I agree, it is not patient-focused care AT ALL. In the big picture, we just need the chemo drugs to get better, they have not changed much in decades. 

Hi @TiffanyM do you recall who at OCC you spoke with? Just wondering if there's an existing pathway for folks to continue to provide feedback from a patient perspective. I know there's the Patient Partners in Research program however it doesn't appear that there's a way for feedback directly to this group (although I could be wrong).

Hi Wendy,

I was switched to Nab-Paclitaxel after having a serious reaction to Paclitaxel and my body was able to tolerate the infusions, but I did continue to have reactions even to the Nab-Paclitaxel, despite pre-medication with high dose steroids and antihistamines starting the day prior to infusions. 

The reactions were less intense with the Nab-Paclitaxel but were still unpleasant and unnerving.

I thought I would share my experience in case you did have a mild reaction to the Arbraxane, to let you know that it might happen, and that it doesn't necessarily mean that you won't be able to get through the treatment.

Best of luck with everything, I'm rooting for you!

Warmly, 

Petra

Thanks for sharing your experience Petra. I appreciate your support. So far (2 cycles) I have had absolutely no ill founded reaction to Abraxane, with a steroid and an antihistamine 45 minutes before infusion starts. 

I am grateful as there are so many other negative side effects from the treatment. 

Best regards, Wendy

I'm glad to hear that your infusions are going so well! I'm sure it's a huge relief to not have to deal with a reaction. 

Thanks for the update!

I wish you all the best on your treatment journey.

Petras