Abraxane
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In this CA heat wave I did very little today, but I did keep moving. Aurora -- like you I just get Zofran before my chemo, but so far I am 3 weeks on, one week off. Artist - understand the steroid crash. Reminds me of when I first had chemo - one day of mad energy, cleaning house all day and then a super crash. Feel better.
(()) Claire
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Had my first dose of Abraxane today. I've been around on the boards for quite a while now, but have failed Ibrance and Xeloda. Looking forward to getting to know you ladies here.
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Welcome SusanR I too have been on the boards for years but this is a relatively new thread. I think I may be the one who have been the longest on this treatment and so far my TMs are responding to almost normal.
Welcome and feel free to ask for questions or share experiences.
Aurora
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I was able to have treatment #3 after my 2 week break. MO has reduced the dosage so I can hopefully stay on a 3-1 schedule. Tired from the long morning but doing ok.
Hope everyone is feeling ok.
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Yeah Kaption! Very happy for you. Rooting for all of us on this med. I am so glad to have a week off.
Hi SusanR - Ibrance failed me after 18 rounds. How long were you on Ibrance and then Xeloda? How many Abraxane treatments are you scheduled for? Lots of lovely ladies here.(()) Claire
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Thanks Aurora and Claire! I was only on Ibrance/Femara for 3 months and Xeloda for 4 months. Significant bone progression on both. So disappointing because Faslodex kept me Stable for 5 years.
SusanR
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Susan, welcome! 5 years on Faslodex is a good run. Wow. I hope this drug works for a long time for you. How are you feeling after your first dose?
Kaption, nice your counts have finally recovered. It sounds like the reduced dose is the way to go so you can stay on your 3/1 schedule.
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I got a call from my oncologist social worker. The foundation that was paying for my treatments has ran out of funds for my disease. In fact the ran out two months ago so I now owe the clinic $2,000 and their sending me to the county hospital infusion room where I can be seen free of charge I don't mind plus I have no choice. My onc has to send the orders to the hospital so I'll be missing my treatment tomorrow. Why didn't she caught this earlier before I accumulated debt and before I had to skip treatment?
When I lived in Orlando I never had these problems even though it's the same treatment centers. I hope the cancer cells don't start growing again while I can get back into treatment.
If you are so inclined please pray the process doesn't take long.
Aurora
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Aurora- have you tried Patient Access Network? They helped me while I was on Brance. KU med hooked us up, but you can contact them directly. MBC is one of the diseases they cover. They were very easy to work with.
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Ladies I need some input on a decision. I have had one infusion of Abraxane and will be getting the 2nd next Wed and then Thurs leaving on a trip for 5 days. I'll get home on Monday and then will have my 3rd treatment one day early so I can leave on another trip for 4 days.
Here's my issue: I am picking up my wig at the salon tomorrow morning and can't decide if I should just have her shave my head tomorrow or risk it falling out badly while I'm traveling? This is such a tough decision for me as I'm mourning the fact that I'll lose my hair as I'm sure we all do, but at the same time I want to be proactive and just take charge of the situation.....
What would any of you do????
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Susan, shave it. It's easier and you might find you like it. :
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I am another vote here for shaving it. One of the most traumatic experiences in my life was my hair falling out when I was early stage and my wig was not ready. I wasn't traumatized by being bald or shaving my head but the falling out in chunks was bad. You are in a different position as you have a wig ready to go but having to deal with that while on your trip, where you may not have a razor handy if things get bad and may not have the privacy you need and/or the right person to help you shave it might not make for a positive trip experience.
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Welcome Susan and I third the opinion that you just go ahead and shave it. The coming out in big swaths was traumatic and once i decided "Today is the day" I cried for about one minute then just went for it. It actually wasn't as bad as I imagined and now I am used to it. I too got a wig for going out or wear a baseball cap when I really don't feel like being totally bald. But ll in all it's not bad.
I am supposed to get my 5th infusion tomorrow but I am still just as weak as last week, neuropathy in hands ect. I am going to ask him to lower the dose again but is anyone else experiencing extreme muscle weakness? I can't believe it is because of the huge weight loss from ascites ect as I should of sprung back at least part way by now. I try and do little trips on my walker to gain strength but the next morning I wake up weak as a kitten.
Also, why do they give steroids in the pre-meds? What is the benefit of that supposed to be? If it is just energy I think I would prefer staring at a lesser level so I don't have so far to crash. Also is anyone having SUPER irritated itchy skin? Tried taking Claritin and lots of lotion but it still feels horrible.
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Artist, I wonder if your MO is throwing in the decadron for energy and/or to stimulate your appetite/trigger weight gain. It usually isn't given with Abraxane, unless a person has a particular issue or sensitivity, such as an allergic reaction to the meds. The weakness you describe is a hallmark of the taxanes. I am not there yet but have only had one dose. I remember having a very hard time getting my legs to move on Taxotere, To me, it felt like the power chord wasn't fully plugged in and the signals weren't making it to my legs to instruct them to walk. I felt like it was a nerve issue as opposed to muscle weakness. It seems like lowering the dose would help if the weakness is too much.
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Artist, my first 2 treatments left me very achy. In the mornings I felt like I'd been hit by a truck. Then I was forced to take a 2 week break. Had a reduced dosage treatment last Wednesday and I've been less achy this week. Still tired, but not like I was at the end of Xeloda.
Hoping the reduced dosage works. Number 4 coming Thursday. I'm fortunate that I've had very little nausea and no neuropathy.
Hope you get a dosage that makes you feel better.
I do not get steroids with mine. I had to take dex when the brain lesion was found- to reduce swelling for rads. I did NOT like how I felt on it.
Best wishes!!
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Artist - I am joining you on the itchy skin. I have some red spots (looks like reddish sun spots my dermatologist treats) on my lower arms and legs. Abraxane can cause a rash, so I will show these to the MO on Friday. My sister wondered whether Abraxane might be killing early skin cancer like a keratosis? We shall see. I do have a history of being allergic to Taxol. oy Round 4 next Tuesday.
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Hi all. I hope everyone's week is going well.
I am really bummed. I was supposed to have Abraxane this Friday. I moved it up to tomorrow because of Hurricane Irma. Now, I have received a mandatory evacuation order and my appointment tomorrow will probably be canceled. I am really stressed about missing the treatment and going through a hurricane with a toddler. I have been through some bad hurricanes before, but didn't a child then. This blows.
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Hi JFL I totally understand your anxiety at not getting your infusion on time and the stress of dealing with Irma, I have both going for me! I was supposed to get my infusion last Friday but due to insurance problems I had to switch to a hospital and now have my appointment at 10 am for my infusion I called today and verified and they're open tomorrow! So the first thing I recommend is call before your appointment and if they're open keep the appointment. Abraxane only takes about an hour so you'll still have time to evacuate. If they're closed don't stress about not getting the infusion on time as I said I skipped last week and everything feels fine. I am too waiting on Irma I'm near Naples and we're getting ready. I was a single mom years back and juggled a kid through more than one crisis! You'll be ok! Try to keep calm. You'll be in my prayers.
Aurora
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Good morning ladies! I had my 2nd Abraxane yesterday. I'm really feeling sluggish this am. Leaving soon for the airport, heading to Biloxi Mississippi for a girl trip. Hoping I can hang in there, catch up on some sleep and have a good time with friends.
I ended up shaving my head Saturday and getting the wig. Seems like a great decision and I've had so many compliments on the wig I'm delighted I pulled the trigger and did I it before the traveling,
Thanks ladies for all your insight and advice!
SusanR
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Aurora, stay safe with Irma! I hope your treatment stays on track for Friday. The timing for us, geez!
My appointment was supposed to be at noon today but I went in before the first appointments for the day started "just in case" and they were able to squeeze me in. I am doing the chemo now. The chemo is quick but the cold cap process tacks on 2.5 hours. My DH is at home packing and we are leaving right when I finish. I live on Miami Beach and my cancer center is also on Miami Beach. Most people have already evacuated so it is eerily quiet here.
I will be passing by Naples on my way up to Tampa. Tampa is not an ideal but better than Miami Beach at this point!
Susan, have a fabulous girls trip! Sounds like you mad a great decision with your hair. Awesome you are getting compliments on your wig
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JFL - rooting for you on this round and a safe landing in Tampa. I also have to wait another 2 plus hours due to using cold caps, but the hair is worth it! Best wishes to all our ladies in Florida coast that Irma leaves you alone, bad enough we have Mr. Cancer. I'm enjoying my week off and watching the rash recede. Hoping for an uneventful next session on Tuesday.
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JFL, that is exactly how my legs feel and also feel it is more of a nerve problem. Went in Monday and he said let's skip two weeks to get those sea legs and hand function back. I was happy but nervous as it seems the Abraxane has cleared up the ascites issue pretty well. Two weeks now with no procedure!!!! Whoop whoop!I'm glad you got your appt squeezed in there.
JFL and Aurora, I hope you fair the hurricane OK.....that is so scary. I can't imagine the stress on top of everything else.
lalady, Interesting observation by your sister as I notice that some "age spots" I've had for a long time are shedding off as part of the itchy skin thing. I too wondered if they were pre-cancerous. I was a definite sun worshipper as a teen....My rash receded on the lower dose but I still itch like crazy and see light skin shedding on my arms. Just curious, Does the cold cap save most of your hair and is that something you purchase and can do at home or is it provided at the infusion place? wish I had had the time to research.
Susan, have a great trip with your girlfriends! and good for you in pulling that trigger. Not crazy about deciding each time I go out, meet with friends or have an appointment, "Should I just go natural, wear a hat or a wig......But so far I'm doing OK!
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Thinking of our FL bc sisters! I have a very close friend in Ft. Myers and we have spent many winters in the state.
Had treatment number four yesterday. The reduced dosage is certainly easier on me. I had no muscle soreness and very little nausea. Just hope it's working.
Artist, I had a 2 week break too. I did feel better, but did worry a bit.
Hair gone. I usually just go with a ball cap. I have a wig and it's pretty cute. But, it's uncomfortable to me. I have my 50 year (!) high school reunion in a couple of weeks. Not happy with how I'm looking. Oh well. Guess I'll hang on to good friends and smile.
Oh, my skin is very dry too with some itching. No rashes though.
Glad to hear that you ladies are hanging on!!
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Artist - cold caps must start on your first infusion and continue with all sessions. The technology is to freeze the hair roots so the meds are diverted to other places. FYI this chemo seeks fast growing/dividing cells like our hair, along with cancer. If the meds are confused they go elsewhere. It works, I have my hair with very little shedding. Downside is sitting for 4+ hours with freezing caps on your head which must be changed every 1/2 hour or so. I hired the rep to bring cold caps to UCLA. It's worth it for me, as I am still working part time and need to look presentable to clients and to myself. Happy to share info if any ladies are considering. I used them during Taxotere in 2013 and Abraxane in 2017. The rash on my arms sure looks like old sun spots - will discuss with my MO today. Wouldn't if be great if we got a side benefit of killing sun damage. JFL how are you? Aurora - are you ok in FL? Kaption- glad this session went better for you.
(()) C
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Hello everyone me and my family are preparing for the big one huracanes here in SW Florida. it is going to hit us hard but the house we're in is sturdy new construction we should be ok. Well I had my infusion yesterday at the hospital's infusion center because the cancer center kicked me over there because my insurance only covers 80% and they dlran out of help money. But it's all good I had my own cubicle tv and headphones set they gave me a turkey sandwich coffee and chocolate pudding. The infusion itself was the regular 30 minutes but the blood lab took an hour. I feel fine and hope it keeps treating the cancer away. I got my next appointment set up for September 22nd since I have one every two weeks. By then the hurricane scare should be past us.
Thank you all.
Aurora
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I hope they put me on every two weeks. This break is helping a little with the muscle weakness...Actually can walk back and forth in my house VERY CAREFULLY without the walker today. Watching the hurricane news with bated breath auroaya.....
lalady, that sounds pretty expensive. Does insurance cover?
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Artist- I agree. I felt better during my forced vacation from Abraxane. But, I have to say, this reduced dosage has been much easier! Hope I get #3 in this rotation Thursday.
Still fighting allergy/sinus stuff- but everyone is because we've had more than normal rain this year.
Watching way too much hurricane coverage as one of my best friends is in Ft. Myers near the river. She moved a higher spot and we were cautiously optimistic last night. We'll see.
Hope everyone has a pain free, better energy week.
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Hi ladies - I had round #4 + some decadron thrown in, so here I sit typing tonight. Session was not that bad, used the same vein as last time - no port. Cold caps still working - I have my hair. Artist - sadly insurance does not pay for the caps, but that's what my savings are for.
Kaption hope #3 is ok for you. My numbers really rebounded on my week off, so good sign my WBC at 4.8 are kicking some cancer. Very thirsty, so heading for large lemonade. (()) Claire
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I'm joining this thread as I will be starting abraxane asap. Was on a keyTruda immunotherapy trial with Xeloda since December 2016 but got kicked off a month ago after Immuno pneumonia developed. My TNBC reoccurred to lymph nodes all over my body last fall and the ones in my mesentery have been the most problematic since spring, now causing moderate ascites in the last month which has really made me very debilitated and almost bed ridden most days. It is frightening how fast I went down. I had no desire to eat or drink for days almost weeks! No hunger or thirst either. A strange bumpy rash developed on my neck in August as well and we biopsied it last week...it came back as TNBC in the skin yesterday. I was really not expecting that I was more worried about ascites fluid which ended up not showing malignancy. Sigh.. but I am ready and prepared to start Abraxane and I don't even care about my hair I just want to feel better. I would take being bald forever to be able to have room to live and breathe in my body again...and feel like I have 'space' again. I have an exceptional MO that I trust completely and unlike chemo was four years ago? I'm embracing the thought of it right now. I'm trying my hardest to climb back out if this hole I fell into and claim my warrior mode again. Thanks for listening -nichol
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Nichol - you are welcome here. Hope this med helps you be pain free and stay active. I'd be interested to hear more about your Keytruda trial. Sounds like you need some peace. If you want to keep your hair, cold caps can help. Please PM me for more info. When do you start treatment? Are you near a large cancer center? Most oncs start 3 week on, one week off, but some ladies are 2 weeks on, one week off. Do you know your protocol yet? This should be be gentler than your AC Taxol original chemo, but please let us know how you are doing. Your warrior will return.
(()) Claire
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