Abraxane
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Missed the dinner with granddaughter, but I’m feeling better today. Left leg neuropathy continues, but nausea is much better.
Hope everyone feels better this week.
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Artist, Ziz and Kaption, my neuropathy is getting worse too. Has anyone heard any tips that help with neuropathy? I have found that B complex sublingual helps a bit. I generally try not to take B vitamins with BC but it does seem to help neuropathy so I take it on the really bad days.
This chemo hit me like a truck for a few days. In addition to the neuropathy and bone pain, I had a few days where I had distinct, noticeable cognitive "sensory processing" issues around day 4-5. Like things were just not connecting correctly with info coming in and responses going out. And I notice I am very sensitive to sound - if too loud or coming from multiple sources at the same time. It did improve after a few days though. These taxane drugs really seem to get me. I just hope they are also getting those liver mets.
LA, I love Mexican Food! I don't have it much - there aren't as many Mexican restaurants in Florida as there were when I lived on the west coast. I get so excited when I have the opportunity to have it. I can't believe you are almost to the 3 month mark. Time is flying.
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Ladies, did you know there's an active thread for neuropathy?
Come on over. Sorry you're in the same boat, but we are at least trying to figure it all out together. The more, the better.
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Thanks lulubee!
JFL-didn’t know about the sensory issues. Scary! Where are you in Florida? We’ve spent time in the Cocoa Beach and Destins areas. Know of one surprisingly good Mexican restaurant in Cocoa Beach. Never found one in Destin. I also have a friend in Ft Myers, if you are in Southwest Florida.
Has anyone had Abraxane make your blood pressure drop ? I had the same issue with Xeloda
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JFL - You have been on my mind, don't like hearing about sensory issues. Still wondering why you are on every 3 weeks instead of weekly like most of us? Hoping all our FL ladies are doing ok. How is your hair holding up? I am heading for chemo this morning, left foot still tingling. I heard L-Lysine or something like that helps, I take B6/12 everyday sublingual. Lulubee - heading to neuropathy thread soon, but can't read today. We need help - any tips? Mexican food hit the spot last night, so much better tasting the day before chemo.
xxx
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Lulubee, thanks! I will check out the neuropathy thread. I never noticed it before.
LA, I talked to my MO about switching to weekly either immediately or after my next session (at the 3-month mark). He is okay/neutral with switching. The only thing holding me back is the time commitment of weekly, especially with cold caps. Since I work full time and am in the closet with Stage 4 dx, it is easier to swing an appointment every 3 weeks than every week. If my symptoms get worse after my next round, I may have not functional choice but to switch to weekly. My hair is still stable, except the bald spot behind one ear where I flubbed the cold cap. I should post pics as a warning to get the cold cap on right! The DIgniCap has a chord connected to the right side behind the ear. It is very thick and can pull on the cold cap sometimes - my bold spot is on the left side of my head, likely the result of the chord pulling the cap too much to the right.
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JFL - I am still working on the "chemo down low" much like you. When I go to the office, I wear a hair halo to cover my short but still-here hair that needs a little dye so my blonde blends with gray. lol I will pm a pic if you want to see no bald spots on Penguin cold caps which don't use a cord. They rent for $495 monthly. Looks like I will continue on A-train through November or December, getting a scan Nov 6th and meeting onc on Nov 14, with chemo scheduled 40 minutes later. I want my TMs as low as possible before I switch to oral meds. My choices after my Afinitor and Ibrance fail now include; Abemaciclib which UCLA emailed me yesterday is getting approved for low co-pay and Xeloda! My scan and TMs will help tell the story; namely do we shoot for something like amebaciclib that does a good job in the head/neck for my jaw met, or do we focus on X for liver? Either way 2 pill choices with possibilities of long runs made me do a happy dance in my UCLA big chair yesterday.
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LA, I would love to see the pics. I had to look up a halo when I heard you use that term. Great contraption. Slightly different than a "topper". I am a huge fan of Xeloda. Awesome that you still have that option. It worked miracles in my liver for 14 months. I heard there is a woman who has been on it for over 10 years! I have extensive bone mets and was worried they would progress on Xeloda after doing so well on hormone therapy but they did not. Abemaciclib seems promising. Good strategy with getting tumor markers down low before switching to Abe.
Each new option potentially gives us more time, even the ones that are not the superstars but hold us over for a short period of time. It is like musical chairs, we just need enough time on the current options to reach the next drug coming to the market before the music stops. Tacking together even some of the short-lived medications can easily add up to a year or more over time. I feel sad I now fall into the "heavily pretreated" category.
My liver is hurting so badly the last few days. I pray that it is dying mets, given the rough round of Abraxane. I get liver pains for both good reasons and bad.
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JFL - I will pm you a hair pic. Meanwhile, please take some comfort that even if you switch to weekly Abrax-train, abemaciclib awaits you despite your Ibrance fail, and you can take it alone - or paired with faslodex or an AI. I am getting lots of info from UCLA to share, and you can sense my delight in adding another year or so to my life without chemo. I do love my clients and job, and supporting my family. If I can do this longer on a pill - I am in. Artist and Kaption - please take a look at this new med too.
And of course I am cruising to the British Isles with my sister at the end of May. I blew all my FF miles to go first class. wee~0 -
Thanks, lalady. I will look into abemaciclib!
Your trip sounds wonderful.
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lalady, I am definitely keeping on eye on this med too along with Xeloda. Am getting anxious for a scan to see if the results are worth this neuropathy. The worst is my hands, my numb fingers and my forearms ache. But also my balance while walking is off. Can't get off the cane yet. I go to stores with shopping carts and just cruise around browsing for an hour or two just to stay on my feet and move.
JFL, why do you not like to take B Vits with MBC? Something I need to know as i started taking them the other day. I need something to help!
kaption, glad the nausea is somewhat better. I have low blood pressure anyway but last appt day had lower than usual....
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Artist, folic acid (in supplement form, folate) has been linked to increased growth of breast tumors. I recall reading about a link between one or two other of the B vitamins (B12?) but there is nothing definitive and reports are mixed. My MO told me B6 was okay. He recommended I take it when I was on Xeloda for hand foot syndrome. I give up! My B Complex sublingual liquid has helped with various side effects of various meds, like hand foot syndrome, mouth sores and neuropathy, not to mention energy.
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Artist and lalady-are either of you impacted by the fires? My son and family live in SF. He and DIL took a quick flight to LA for a long planned anniversary trip. Couldn’t fly home. Rented a car, picked up some fire masks outside of LA and drove home. I haven’t heard anything this morning. DIL family has a house in Truckee, so I’m wondering if they are headed there. How are you? Smoke? Several of my DIL family live in Sonoma and have had to evacuate. Scary stuff. Take care.
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Kaption - I live south of LA near the beach, cars and backyard were covered in soot, but no other damage here. Will be getting a good car wash on Saturday. Hoping for a pain free weekend for all.
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JFL and any ladies interested in cold caps, here is the back of my hair after 7 sessions of abraxane using cold caps. 90% is still there, no bald spots, but I can't color it until I am finished with chemo.
) to any ladies wanting to save their hair.
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Claire, thanks for posting. Your hair looks great!!! The cooling caps are really working well for you.
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Hi ladies - more good news. 3rd month of Abraxane, TM's dropped by 1/2 again! Plan is for PET on 11/6, meet with onc on 11/14, and have chemo that day. I am booked 3 weeks on, one week off, through Nov and Dec at UCLA. At this rate my TM's should be in normal range or below. These numbers remind me of chemistry class when we measured half lives of radioactive elements. wee~ I intend to finish this punishment for 5 mos (ending Dec) and move to either; Abemaciclib (paired with faslodex or something else) or Xeloda. That will be determined by my scans. Per onc no liver biopsy required. So hopeful and happy to share my good news. Main SE is mild neuropathy in my left foot (with apologies to Daniel Day Lewis) along with low RBC and fatigue. Decadron holding drug rash at bay.
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Wonderful news lalady! So happy for you. My PET is tomorrow.
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Whoa, thanks of that info JFL! I will look into the B complex sublingual (is that OTC?) and stop the folic acid.
Kaption, I live in Reno now, 25 minutes from Truckee. We have had a few grass fires but nothing huge lately. We had smoke here a few day depending on how the wind blows. We flew out of Reno to LAX and back for my daughters wedding but had no delay issues. SF must be much more impacted as they are Bay Area. What a horrific situation! When I lived in Truckee, especially the last few years we were always on high alert for fire. Good luck on the PET Kaption! We'll be thinking of you!
Wow lalady, wish I had looked into a cold cap before I lost mine. I did not like wearing a wig for my daughters wedding.....
I think it may be cost prohibitive for me though.....your hair does look great! Congrats on the good news and may it continue. I had another infusion yesterday and my neuropathy in my hands is so bad. Plus my leg muscles are still weak so use the cane still outside the house. Trying to navigate without it when I can. Also time to get back to my little gym and work on the thigh muscles.My daughters wedding as beautiful and perfect, a really lovely day!
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Artist - lovely pic of daughter. Heart soaring. So glad you made it to the wedding - wig and all. Cold caps cost $495 monthly, my insurance doesn't help. But its worth it to me. Maybe other ladies insurance can help - they should. Hair loss is devastating for many of us, but not crucial to living. I have a hair piece to add for work. Hang in there with neuropathy. I also use sublingual B6/B12 from Trader Joes - no folic and get B12 shot monthly. It helps so far.
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Artist- what a beautiful picture for a beautiful couple!
Glad the fires have not impacted you. I think SF air is improving. DIL relatives have been allowed back to Sonoma houses and all are still standing!
I’m sorry about your awful neuropathy. Mine is minor. I take sublingual B12 every day. I think there is B6 in my multivitamin.
Had a lovely outdoor lunch with DD today. Ready for scan tomorrow.
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Claire, congrats on the falling tumor markers! What a good feeling.
Kaption, good luck with PET tomorrow. Sending you positive thoughts.
Artist, your daughter and the picture are beautiful.
I haven't tried yet to get insurance coverage for the cold caps but plan to do so. I was able to get my insurance company to reimburse me for about $700 of the cost of my wig 11 years ago. I just needed coaching on how to properly file the claim with the correct "j" code. The owner of the wig store helped me with that.
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Wow, I need to try and get reimbursed for my wig too and possibly a cold cap. Will a cold cap allow your hair to grow back if it is already gone??
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Hi ladies,
Congratulations on the good scan results and TM falling. My TM keep going up and the scans show stability so I decided to stop worrying about it.
Neuropathy is getting worse but I can still have a decent day to day life.
My left hand wich is where the port is is swollen, MO was concerned that it could be a trombosis, I had an US yesterday and there are no blood clots so that is good. We are think maybe the premeditation is causing all this because I’m even a little swollen in my face.
I’m right now on the combo Gemzar/ abraxane and I might be put on something else.
Warm hugs from CR
Ziz
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My neuropathy gets worse every time. Today my hands are just buzzing and weak and fingernails feel weird like they are coming loose...
Glad the scans are good Ziz and no blood clots!
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artist-so sorry to hear. Think you’ll get a dosage reduction?
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Artist, my MO cut my dose by 20% when my fingertips became painful and even though I still had problems touching anything for a few weeks, it does get better. It's about 4 months later now and seems like a distant memory, the bright side is that Abraxane works really well, even at a reduced amount. Hang in there
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Asking for prayers for Peacockgirl. She is a member of our chemo group since 2013. Last week she was rushed to Er with speech & sight problems. They found her cancer had spread to her brain. This morning we found out it is rapid & aggressively moving, now in her spine & she only has days left. I'm heartbroken.. Thought I would post here as she spoke as to the great group of ladies she had found within this group. Hold each other tight. Hope u don't mind me butting in like this. Fran
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Fran thank you for letting us know may she rest peacefully and may her family have comfort in knowing she won’t be in pain much longer
Aurora
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Sending gentle hugs and kind thoughts to Peacockgirl.:) Fran - please keep us posted. Is she allowed to come home, or staying in the hospital?
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