Hi folks. I thought I should post the name of the chemo I will be getting, starting next Wednesday. It is Abraxane (Nab-Paclitaxel). The side effects expected are basically everything you have ever heard. Hair loss and muscle and joint pain and the two givens he said. I will get it once a month. They were going to start this week but my neutrophils were 0.6 after a week off Ibrance and it always takes a couple weeks for mine to get back up there. With the Covid restrictions nobody is allowed with you for treatments but they said they would phone anyone I wanted them to so they could have updates. A lot of paperwork and a video to watch. Enough to make me more nervous. 😞. A friend of a friend messaged me to tell me how her chemo was and although her was a different drug and her breast cancer had not metastasized it gave me a good idea of what to expect. She said that most of the side effects went away in a week and she felt great for the remainder of the month. That would be nice if it happens with me as Ibrance really knocked me down and I have never been able to function normally. If you have any questions please feel free to ask and I will hopefully have the answers. Guess it’s time to find out where I can get affordable wigs. All the best to everyone and thank you for the bottom of my heart for all the support.
Chemo Update: Hi folks. I thought I... - SHARE Metastatic ...
Chemo Update
Hi again! I just replied to your reply on another post but want to add that I've had 7 Abraxane infusions and haven't had any joint/muscle pain. I didn't even know that was a side effect! I've had IV's 2 weeks on/2 weeks off, am now switching to 1 week on, 1 week off. I lost my hair after the second consecutive week. If you only have it once a month you many not have such a dramatic loss. I find the neutrophils dips are milder on it too.
I was pretty nervous the first time (it was my first IV infusion of any kind) but it went in easily through an arm vein (I don't have a port), takes about 30 minutes plus 15 minutes to flush the line and be sure it's all in. Even after having it 2 weeks in a row my fatigue hasn't lasted longer than three days; I hope you'll find the same, I think it's easier than Ibrance that way.
My fingernails are getting funky, ridged and a few of them are starting to lift a little. Otherwise really not bad. Amazon has lots of cute chemo caps and I did get one cute wig ...that was before I realized I wouldn't be going out for months! But I sometimes put it on for Zoom dinner dates with friends! 
I was also nervous about going to the hospital for infusions once COVID took off but they are taking so many safety precautions I feel very secure. I also wear a mask (of course) and gloves and stopped taking in books and snacks....less contamination possibility. I don't even take a purse, just put my driver's license and insurance card in my pocket. I take the gloves off right outside the hospital when I'm done and use hand sanitizer in the car. When I get home I throw all my clothes in the washer and spritz the cards, keys, glasses, etc. with an alcohol solution before jumping in the shower. Call me crazy but so far so good....though I do feel a bit silly streaking through the house from the washing machine to the shower!
I really hope you have an easy and effective time on Abraxane. Thanks for keeping us posted!
Thank you so much for all the information. I’m wondering why mine is once a month while yours is more often? That seems like so much chemo. My oncologist told me it would take one hour and 15 minutes to flush it through. Maybe mine is a bigger quantity at a time.
I get 135mg dose each time. Maybe your dose is higher, or your doctor wants to start once a month and keep a close eye on your neutrophils.
As I understand it, both Abraxane and Taxol are taxane chemos with similar side effects. Taxol is older and not very water soluble so it requires a solvent called Cremaphor (basically a form a castor oil). Because some people react to Cremaphor patients are also given Benadryl or other premedications. I'm allergic to castor oil so I was pretty adamant about wanting Abraxane instead. Abraxane is bound up with albumin which the body can absorb so there isn't a need for a solvent.
Regarding the time, what takes the longest for me is the wait between getting my lab results and getting the Abraxane mixed up. Apparently it's a powder that is custom-mixed by the pharmacy before each usage. Maybe your doctor figured that time in too.
He told me to get my blood work the day before chemo. I will ask what the dosage is and why the different wait times. Thank you.
It takes longer for the first IV as they are watching for reactions. I had it every week for 19 weeks when I started to have side effects. I felt very well on it. I changed from Nab taxol to taxol after a couple of weeks as it had less side effects for me. I know Nab taxol is newer and more expensive but my body just did better with the older version. Good luck
Thank you.
I never had muscle aches either in Abraxane. Was actually a pretty easy chemo. Get a wig and if your hair starts to fall out, shave it off. Abraxane worked great for me.
Thank you. Another lady on here told me my chemo drug was an updated version the nab part means that. Not that I know anything about it.
I got it 5 years ago. There is another form of it which is slightly different. Had a few doses this winter and was premeditated with a steroid. Still no issues except wbcs, which were also lowered by original chemo and for which I got neupogen injections and did lose my hair.
I am hoping that you don't have the range of possible side effects. It sounds like Nan has been spared several of them so I would defer to her.
You are very gracious to offer to accept questions during this challenging time. I sincerely appreciate your offer.
I am curious what factors you considered when you decided on this new course of treatment. I had 2 breast cancer occurrences before the latest Stage 4 MBC. The chemo kicked the cr*p out of me both other times. I had nausea, fatigue, hair loss, loss, mood change, etc. The second time with Taxol was especially rough. I am handling the Ibrance ok but I would have to think long and hard about whether I could or would put myself through chemo again. I tend to think I tried it twice before and it returned, and I know for sure with MBC it won't "cure" me. I am not looking to "borrow trouble" and am appreciative the Ibrance is currently working. I've had relatively few side effects thank goodness.
FYI, I used the cold caps the second time around and kept my hair which was important to me. I hated looking in the mirror and being reminded each time of what I was facing. I respect others who don't feel that way. If you are interested in cold caps, let me know and I can share my experience.
Peaceful prayers to you.
I really had no decision in my treatment. My stage 4 breast cancer was de novo. It was found already spread to my bones before it was ever discovered in my breast. They had to go hunt for the actual breast cancer. Ibrance was the drug my oncologist recommended to prevent chemo for a while. He said there are no other oral cancer drugs that match the specifics of my cancer. There are no trials going on either because of the Covid restrictions. Ibrance has been brutal for me. My exhaustion started day one of treatment and has never let up. My neutrophils always dropped to around 0.5 each month and it would take 3 weeks for them to get up to 1.0. I don’t think chemo could make me any more fatigued.
So great that you are having a good response with Ibrance - may that continue for many years!
Before I was diagnosed denovo with MBC I swore I'd never have chemo. An easy thing to say when I thought I was healthy. Though I don't have experience with earlier stage breast cancer treatments, it seems to me that chemo is viewed a little differently through the MBC lens.
First, since the oncologist isn't expecting a cure, they don't necessarily go with the highest dose of the strongest option in the hope of getting rid of the cancer. Since the horse has left the barn, they are more interested in stopping/controlling the spread as long as possible while minimizing side effects that might cause a patient to stop treatment.
Second, it seems as if the number and effectiveness of chemo options keeps growing, and there are options that may not be as toxic as even 5-10 years ago.
But this is just my experience....I wonder what others in this group think. I share it just in case you are faced with a chemo choice down the road. If I hadn't started Abraxane in February I think there's a good chance I wouldn't be here to write this today. But now I'm going to make my green juice, take a mile walk, cook dinner and Zoom with grandkids this evening. My hair is gone and my nails are looking weird but I have to say I'm grateful for this chemo choice. And grateful for all the complementary options available to help my body deal with the side effects.
Great to hear that cold caps worked for you too! I'm using cold packs on hands and feet now to help prevent neuropathy.
Peace to you too!
Patty
Thank you for your kind feedback. Regrettably I’m one of those people for whom chemo is brutal and soul crushing. It was bad for me in 04 when doctors assured me it was better than 20 years earlier (undoubtedly true) and very bad in 2014-15 when I was again told they could control the bad side effects. I know friends who managed chemo much better than I did. I’m grateful they benefited in ways I did not. I dread when that decision needs to be made as I don’t expect I will have any better tolerance.
Hi Patty
I was diagnosed in 2003 with an aggressive stage 3a BC and was thus treated with a high dose chemo (FEC). I won’t go into details but I had many, many issues along the way so it has coloured my view on whether I would go down that road again! It was also followed by 5 weeks of radiation.
I’m currently on Ibrance 100 & letrozole And also get zometa every 12-15 weeks. So far it’s been ok, fatigue is the biggest issue. I continue to work 5hrs/day every day so that probably doesn’t help the fatigue but it keeps me sane and feeling ’normal’ , not like cancer has taken over my life completely.
Sarah, you’ve never been down the chemo road so it’s still worthy of you going down the path. Many drugs have changed in the past 17 years and there are many news ones that are better than what I went through. Just keep telling yourself that you’ll be fine and you’ll get through it. One day at a time.
Susie❤️
Thank you Susie. We have all watched the movies and tv shows so we are it as an awful situation. A friend of my best friend had chemo for BC 10 years ago and she messaged me and told me how it was as each appointment. Although her drug was different and she did not have stage 4 it helped me to understand as it really is and it just the facts the doctors tell you. I am a bundle of nerves but once Wednesday comes and goes I will know what’s going on and I will be able to settle down 🤞🏻the side effects are bearable.
What exactly is a cold cap. I hear people mentioning them but have no idea what they are.
You can google it and probably find a better explanation than I will give. 😀 It is a cap system you wear on your head during your chemo day. It’s stored in dry ice to keep the caps very cold. Hair is one of the fastest growing things on our body. Chemo kills fast growing cells. The cold caps essentially chill your hair and retards the hair killing chemo. The caps are changed about every 40 minutes from the start of chemo until about 2 hours after your treatment. My husband helped chill and replace them. Since I had chemo once every 3-4 weeks for 4 sessions, it was doable. If I’d needed chemo on a more regular basis, I doubt I could’ve done it because it’s very cold. Having said that, I kept my hair. You have to start with your first use so if you’ve already begun it won’t be a benefit. There are several companies on line we found in 2014-15 when I did it. Some of it was covered by insurance. I hope this answers your question. Feel free to ask away
My chemo will be a permanent thing so that wouldn’t work.
I agree with your assessment. It was challenging enough to draw the cold caps once every few weeks. They are almost freezing cold. Just as I’d start to feel less cold, it would be time to change it and put on another freezing cold cap.
It’s lousy that you are on chemo and you definitely don’t need to add this burden to your list. I’m sending my support and good wishes.
Thank you ❤️
Good luck and good news from the new treatment. I've worn wigs for most of adult life for religious reasons,recently for hair loss. You can get whatever you want. They're comfortable ,look great.
There is a wide range to choose from...synthetic like Paula Jones, human hair and customized.
My daughter ordered pricey wig for less than half price from China,not sure that's an option anymore....
There are even used ones and sometimes real bargains.
Wishing you and everyone blessings from Above for recovery.
Thank you for the information.
Thank you. A lady I know got hers at The Sunshine Room. A place on the chemo floor where you can sit and rest or get Reiki and massages. I will email them as I’m assuming they will be closed with the Covid restrictions
Hi Sarcie -
Gosh, I'm so sorry about you having to deal with a new treatment! I've not yet done Abraxane, but did do other IV chemo back in the day. I remember being jittery beforehand, for sure. It was all so new and, like you, I worried a bit about the hair loss, not that my hair was ever anything to write home about, but just the feeling when it started to fall out. I can picture that moment to this day...so bizarre.
I did not do wigs, I'm not sure why, but got some groovy silk scarves/head wraps that I loved. Add sunglasses, and I felt kind of like a 1960's movie star. I kept one, partly out of superstition, i.e. that I might need it again in the future (I now know I will!) and putting it in the charity box might jinx me.
I've said to many people over the years....IV/hardcore chemo was not nearly as bad as I feared it would be. But the experience was very, very new and strange. Not necessarily in a bad way, just different.
I hope you do very well with it and that it does its job effectively!
Sending love and best wishes, Lynn
Thank you so much Lynn for your post. It’s first hand experience that helps calm me and it gives me courage to meet this head on.
A lady I know through dog rescue had cancer several years ago. I messaged her to ask where she got her wigs and as our conversation went along she remembered she had some hat/scarves. They are like a cap but have long ties on the back that you can tie to look like it was a big scarf. She dug around and found four that she hadn’t given away so she put them in a bag in her mailbox and my son picked them up. He lives near her so he will bring them out to me. I was so touched with her thoughtfulness.
Again, thanks for letting me know that it isn’t always an awful thing to have chemo.
Abraxane worked for six months for me. It did stall out. However, it shrank the tumors and then I did radiation. I used a cold cap and ice booties. I did not lose my hair. Keeping my hair really helped me professionally and socially but it did extend the actual treatment time. Today, with social distancing, I think I would just get a wig as that is good enough for Zoom! Had fatigue but all other symptoms were mild. It just stopped working quickly. Now six months on Ibrance and Letrozole. Seems to be working nicely. Down to 75mg - partially due to COVID concerns and also to tolerate the drug for the long term.
This is my second turn with breast cancer. 22 years apart. Lots of treatment options today and much more public information. Sometimes I think too much! I was definitely deaf and dumb the first time but in some ways that was better. Now, I feel with all the info available , I need to be on top of things!
I have been told that mine is a chronic condition. So, my quality of life is to a great extent up to me. My game plan is to integrate the following in a daily/weekly basis: good nutrition, yoga, journaling and exercise. Nutrition and exercise I have been doing a good job at. No sugar and very little alcohol. Now need to make yoga and journaling more of a habit. They are about relaxation, stretching to relieve pain and perspective.
My son lives with us now. Lost his job due to Covid. Was at ESPN. No live sports so most were fired. Terrible company. He is 27. I really want to set a good example for him by keeping at it, trying lots of things and having a good but realistic attitude. Frankly, if he learns more about life and handling exteme challenges, then something good can come out of this.
I think the end is several years off - just want to better enjoy them.
Hope this is helpful. Everyone IS different. I thank God for all the innovations, the wonderful healthcare professionals and my little family.
Good luck. You will be fine.
Thank you for your support.
Thanks for keeping us updated. Hoping you have very little side affects and all goes well. You always seem to dodge each new curve ball and march ahead. So encouraging.
Your post generated a lot of answers and great information for all of us. That is the wonderful thing about this forum.
Cheers, June S.
Thank you June. I’ve decided that I can’t do anything about this “freaking” cancer so I have a quick cry and then get back at it. I don’t want my kids or husband worrying anymore then they already are.
This forum offers so many experiences and the support is amazing. I don’t know how I would do it without each of you ❤️
Sarcie!
God bless you and may your side effects be tolerable. Hope they subside as they did for your friend. You are in my prayers, sweet sister!
💗💗💗💗💗🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻
Linda
Thank you Linda.
Cancer Care will send you a free wig! Don't know how old you but Medicare will pay for a wig if you get a perscription from your onc.
I’m in Canada but I’m going to check with the Canadian Cancer Society. So many things are closed because of Covid.
True
I am pretty sure the Canadian cancer society will assist you with a wig.
If you do have any private medical benefits sometime wigs will be covered.
All the best , try to be kind to yourself .
Luann
Thanks Luann. I will email them to find out.
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