Abraxane

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  • anotherone
    anotherone Member Posts: 555

    hi folk. I am going to join you lot for a few months - then the plan is to keep me on H&P only. Just wanted to say Hi.

  • nayda985
    nayda985 Member Posts: 270

    HLB abraxane exhausts me also, I have extreme fatique:(..lol...they are right when they say chemo affects everyone differently. B/c it messes with my hand, fingers, feet and toes..lol...I really hope you get approved for your new treatment and it also works:)

    Paulinek I was estrogen positive first go around also, now I am triple negative, I still don't understand that also. Far as the hair...with Abraxane all my hair came out and even my eye brows...lol.

    **hugs everyone**Heart

  • JCSLibrarian
    JCSLibrarian Member Posts: 548

    Hello all! I have been on Abraxane since January 2019. The dose was cut after some initial white blood cell problems. I have had some fatigue, but can work with it. My hair fell out pretty quickly. I got to take a break for a month in July. My hair started growing back! I now have straight hair about a quarter inch long, minimal eyebrows and eyelashes. I have had two cycles since the break and still have hair!

    The chemo is working on the cancer. The primary tumor in the breast is gone as well as the metsto the lung. I am hopeful that after the PET scan the end of this month I can quit for a few months. For me, this chemo has been very tolerable.

  • nayda985
    nayda985 Member Posts: 270

    JCS so happy to hear your hair grew back!...I have been wondering if my hair and eye brows will grow back after completing my final round. I am also happy that the chemo is working for you!!!

    Heart

  • anotherone
    anotherone Member Posts: 555

    yesterday was my first day on it. As I am her+ I am supposed to be on it for a few months and then stay on h&p. I described my full saga in h&p thread. No side effects so far. When do they start ?

  • Paulinek
    Paulinek Member Posts: 36

    my hair and eyelashes started growing back aftermy 3rd cycle, but my hair is fine, fluffy and about half of what I had before. I just finished my 4th cycle.

  • Gumdoctor
    Gumdoctor Member Posts: 618

    Hello All -

    I just found this thread...

    Just had infusion #7 3 days ago. MO wants me on it until it fails...

    Will do some reading to catch up and will be back soon...

    Gumdoctor

  • anotherone
    anotherone Member Posts: 555

    It is hard to believe how bad it sounds - "being on chemo until it fails". My heart goes off to you , gumdoctor. I find it difficult to adjust to an official line of "treatment till the end of life" even though I am very lucky (as yet) that it is not necessarily chemo. I live with a dream that I will get to NED and stay there and will feel secure enough to rip the port off and forget about all of it as if it was a bad dream. I sometimes think I am in that dream and when I wake up there will be nothing of it...

    How you got on with your 7 infusions?

    I had just 2. Not sure yet how it affects me , I think it makes me move like in a syrup on the second day. Having said that I managed a few errands, food shop and cooking on those days. Was hard though. Could not eat this time. Coupled with not eating before (trying to fast) I am not sure whether fast is a good idea.. Had 10 hours driving on the third day . I am trying acupuncture with it - I believe it should be helping.

  • Gumdoctor
    Gumdoctor Member Posts: 618

    Anotherone -

    I have a few seconds each morning when I wake up...where I have forgotten...then I remind myself...oh yeah...this is where your life is now...very painful lovenox injection when I get up...very painful lovenox injection before I got to bed...phone calls from clinic...portal messages...THIS is my life now...oh yeah...

    I wish for what you wish for...but in my case...I think death and going to Heaven will be my ultimate moment of relief.

    I had neuropathy after the first infusion of Abraxane and Carboplatin. MO was extremely concerned and withheld treatment for a week. She then held Carboplatin and reduced A dose to 90%. Neuropathy is still here but getting worse only very slightly. My right big toe is completely numb. All fingers and toes tingle. Taste buds are 50% or more gone.

    Constipation is an ongoing issue. Had first big horrible bout of diarrhea; happened 2 days ago. Very very scary but seems to be gone. Possibly it was something I ate.

    Apetite reduced but I still eat. Things just don't taste normal. Bland, boring, disappointing instead. But I still eat...

    Fatigue has been an ongoing issue for me since 2010, 3.5 years before my original bilat stage 3 diagnosis. It may be slightly worse on A but hard to say.

    Biggest issue now is 3 huge blood clots. This is probably not related to A but to the cancer. They think I had an ischemic event to my liver about 2.5 months ago. Numerous lesions show up as infarcts (cell death) now in last week's images. This is very rare so Drs are unsure what it is. But they think 2 blood vessels were blocked from blood clots and caused significant liver damage. They also think the liver is healing from this event and we are just seeing what it looks like now on imaging, as it heals.

    They just scheduled an ultrasound with contrast guided liver biopsy for Oct 9. While this is scary to me, I will be relieved to have it done and see what more it can tell us.

    Hoping all this detail can help you or anyone reading. Sometimes it is too much info and sometimes it is very helpful...

    Thinking of you as you continue on the A-train. I read from the beginning of this thread and got about halfway through. Some called it the A-train and that term works for me.

    Hoping we get to stay on this train together for a good long while...

    Gumdoctor


  • anotherone
    anotherone Member Posts: 555

    gumdoctor , hugs. I wish you for something other than death to find to help.

    I think I know what you mean re fatigue - one forgets how one should have been and it is hard to compare as the initial position shifts.

    You not using Emla u other topical with your injections ? I remember when I had Lupron it helped. Are you on anticoagulants? I developed a clot in my vein in a port at the time of primary diagnosis so I am on rivaroxaban now ( with a doctor saying it may or may not help)

  • Gumdoctor
    Gumdoctor Member Posts: 618

    Anotherone -

    Yes I use the topical for the injections but it helps only slightly. The Lovenox burns for at least 10 minutes after it is in like sciatic nerve pain burning. The topical only helps a tiny bit with the needlestick part. I was on Eliquis when clot #3 occurred so MO switched me to Lovenox. It has a different mechanism of action.

    It hurts so much I am skipping injections once a day here and there. I know this is bad but I can't bring myself to induce that much pain twice a day. I need to find a better eay to cope with it than skipping doses...

    Gumdoctor

  • anotherone
    anotherone Member Posts: 555

    there are different topicals.. this one is far stronger than emla.

    image

  • Gumdoctor
    Gumdoctor Member Posts: 618

    Very interesting. I will research this some more. It still won't address the buening once it is in tho.

    Thank you.

    Gumdoctor

  • anotherone
    anotherone Member Posts: 555

    I guess depends on the depth of numbness and position of nerve endings responsible for burning..

    Yesterday after I eaten I was so tired and nauseous I thought I would be sick. Managed a very fast walk for 2 hours before that though the same as I would in the last few months before chemo I reckon. Due to me constantly travelling for treatments ( 5 hour drive one way for vitC, the whole day train journey for chemo) I did not have an opportunity to exercise at all in this 3 weeks. Given up on fasting before chemo - between feeling like not eating after and fasting there was no opportunity for refeeding so I was losing weight again.

  • cyathea
    cyathea Member Posts: 340

    Question: How many of you lost your eyebrows/eyelashes on Abraxane? Does anyone have any tips for looking more "normal" after this happens?

    I did a pre-chemo buzz to be able to use/donate my long hair. What was left of my hair started falling out 2 weeks after I started chemo and after the second treatment most of my hair was gone, but I still have my eyebrows and eyelashes. I am really dreading losing them on Abraxane.

    I'm new to the forum. I was diagnosed in June with a 5.4 cm tumor in my right breast and a smaller tumor in my left breast and in my left lymph node. I had two cycles of Taxotere-Carboplatin-Herceptin-Perjecta and then had very high liver levels that caused a 6 week break. When they were trying to figure out what was happening with my liver they found a bone lesion on T11 that was not on the CT that I had before starting the chemo. Although I did not get a biopsy yet to confirm, it is likely that I have MBC. I also had some micro-nodules in my lungs in June but they were too small to biopsy so the doctors were initially treating me as a Stage 2 rather than MBC. I'm now on Abraxene-Herceptin 3 weeks on/1 week off. I had my first treatment yesterday. I have fatigue, nausea, and I woke up to muscle/bone pain.

    When I was on TCHP, I took a steroid (dexamethasone) before treatment and had a Neulasta patch. I thought the muscle/bone pain was from Neulasta, but now I wonder whether it was from the Taxotere as well since I have the same reaction on Abraxene. I hated the dexamethasone. It made my heart race and gave me insomnia. I also have Grave's disease (autoimmune hyperthyroid disease). The steroid made me feel like I was hyper again, but my TSH levels have been fine.

    My recent good news is that the MRI and CT showed no tumors in my liver. The issues were probably cause by a combination of the chemo, having had Hepatitis A last year, and having passed a gallstone the week before I was supposed to have my third chemo. A breast ultrasound also showed that my left lymph node looked normal and my right tumor showed that the chemo was working.

    So far, I'm doing pretty well and I've been able to continue working. I count my blessings. I am one of the lucky ones to have really great support at home, at work, and from some great friends. Thank you to everyone who has posted in this forum. I have read pages and pages. It's informative and encouraging.

  • Gumdoctor
    Gumdoctor Member Posts: 618

    Hello Cyathea -

    Welcome to this small group. I too am new to the group and read many many pages of the thread starting from page 1.

    I have lost about half my eyebrows and most eyelashes. I think my eyeglasses distract from making it more noticeable. I have not gone to makeup yet.

    Picture shows me 2 days ago waiting to be taken back for liver biopsy. Hair is, of course, a wig. I shaved my head in a live Facebook video in July after starting Abraxane. Some is trying to grow back in but it is just fuzz and extremely thin.

    My liver progression, while on Ibrance and Faslodex, has been severe with complications of 3 huge blood clots and an ischemic event causing numerous spots of liver cell death (infarctions) while I was on Xeloda for only 10 days. I now have to do Lovenox injections 2x a day indefinitely as I was on Eliquis when the 3rd blood clot occurred.

    Currently on Abraxane at 90% dose weekly for 3 weeks then off for 1 week. ONC dropped dose due to hand and feet neuropathy after dose 1. Apparently it is not supposed to appear that quickly. I have completed 8 infusions and hope to have #9 next Monday. Hand neuropathy much worse after infusion #8 so we may be looking at another dose reduction of have to switch to different chemo.

    I am hoping liver biopsy gives us more actionable information. Hardest part is not knowing what's going on.

    Best Wishes to you.

    Gumdoctor

    image

  • JCSLibrarian
    JCSLibrarian Member Posts: 548

    I have been on Abraxane sine December 2018. I have lost eyebrows and eyelashes. It appears they are determined to stay gone. I use a liquid eyeliner and an eyebrow crayon. I look less sick with the makeup on, but do not do it every day. My ANC fell really fast, so the Abraxane dose was cut by one third. PET scans have been clear since the very first one showing a tumor in my lung. The steroid bothers me, too. It has been cut in half as I have been very lucky with no real side effects. Best of luck with your treatments!

  • HLB
    HLB Member Posts: 740

    Hi, I lost all Hair on abraxane. I had no eyebrows or lashes and no hair in my nostrils. I used a pencil to fill in the eyebrows, the red one from Maybelline that comes 2 in a pack. For the eyelashes I just didn't bother. I tried to use eyeliner but it didn't work because that area was kind of wet from not having lashes. Most of the time I didn't bother because it was just too much work. I wore darkish lipstick and nothing else and pretended it was a "look" lol. My skin was super smooth. I think false lashes would probably work best once you get skilled at putting them on. Just takes a little practice. 

  • anotherone
    anotherone Member Posts: 555

    permanent make up? I have eyeliner tattooed from before.

    Ladies , why are you having steroids on abraxane? Was not the very point of it that you did not need them with it due to no solvent ?

    Gumdoctor , a wig looks so good - I wish I had hair like the wigs , and they make them somehow so natural looking!

  • HLB
    HLB Member Posts: 740

    I agree. I didn't have steroids with it. 

  • cyathea
    cyathea Member Posts: 340

    Thanks everyone for the tips on what you do for eyebrows/eyelashes. I’m using the Mabelline red pencil for my eyebrows now. I’ve never tried false eyelashes but I’m thinking of learning how to do this from a friend. But I imagine it will be too much of a hassle for most days.

    To clarify, I had the steroids while I was on Taxotere/Carboplatin. Now that I’m on Abraxane I don’t take them, which is great!

  • Paulinek
    Paulinek Member Posts: 36

    I lost my hair, eyebrows and eyelashes on Abraxane but my eyelashes started growing back after my 3rd or 4th round. I also have very fine fuzzy hair but you can still see so much of my scalp. I still have to shave my legs but the hair is much finer

  • cyathea
    cyathea Member Posts: 340

    I talked to the onc nurse yesterday during my treatment. She suggested putting a cold pack on my toes for the neuropathy. She said to wear socks and only do it for a short time (like 5 minutes). Has anyone tried this?

    She also said that Vitamin E might help with the hot flashes.

    I took 400mg Ibuprophen and 25mg Benadryl last night and it really help me get more rest than last week. I have muscle pain that ping pongs to different areas of my body. It’s weird.

    So far, the nausea has been much less than after the first treatment and I think that is because my gallstones are behaving again. My liver numbers are almost normal! This is a good reminder that not all problems are from the chemo and if the doctors are diligent they can sometimes find the true cause of the problem

  • anotherone
    anotherone Member Posts: 555

    yes I am using cold socks ( natra socks from amazon)- they are useless , barely cool , don't know why they were recommended. You may want to try frozen pea bags . I am holding some use cubes in my hands as well , I stick them into nitrite gloves and tie the gloves so that I hold the cube through the glove. Feels cold so must be somewhat effective but I am doing it just for half an hour of infusion - I guess ideally O would continue for another hour ..

  • Gumdoctor
    Gumdoctor Member Posts: 618

    image

    Sorry for the gross picture...but it looks like I am going to lose several fingernails. Several look just as bad as this one. They started looking different several infusions ago...

    Not looking forward to this. I did not lose any fingernails on stronger FEC-T chemo during stage 3 bilat BC...

    Gumdoctor

  • cyathea
    cyathea Member Posts: 340

    Oh no! Gumdoctor, so sorry about your nails. You have been through a lot already and now this! Ugh, SEs are so frustrating.I hope they don’t hurt too much. Does your med team have any suggestions for how to keep them?


  • Gumdoctor
    Gumdoctor Member Posts: 618

    I have only mentioned how they are changing. Had severe finger pain 2 chemos ago and she dropped dosage from 90 to 80%. Pain much better but nail condition worsening.

    Will discuss at next appt in 2 wks.

    Thank you for your concern.

    Gumdoctor

  • illimae
    illimae Member Posts: 5,739

    sorry gumdoctor 🙁 my nails got so bad I was in flip flops only for months but it was summer in Texas. Mine looked worse but never actually feel off, I just used bandaids to keep them from catching on anything. Good luck!

  • jamiemarie
    jamiemarie Member Posts: 51

    Hi Gumdoctor, I’ve been on Abraxane since May and my nails are looking rough recently too; super sore and separating from the nail bed. I have one where the slightest bump to it causes it to bleed. I just finished my off week and the soreness has improved a bit. I saw my MO today, she acknowledged its a known side effect and I’d probably lose some nails. She seconded Mae’s suggestion of wearing bandaids to keep the nails from catching on things. Her main concern was infections, she told me to call if the skin around my nails got red and puffy or pus drained from the nails and she would put me on antibiotics.

    Just wanted to let you know what I learned and that you’re not alone! I never realized how much I used my nails or pressure I put on them for every day things until now. Opening ziploc bags is impossible for me right now! But was most upset when I couldnt fasten the clasp my necklace because of the pain and nails separating

  • Gumdoctor
    Gumdoctor Member Posts: 618

    Thank you for sharing your experience Jamiemarie.

    I knew fingernail involvement was a possibility...just shocking when these possible SEs become reality...

    I hope we both get through this with few additional issues...

    Gumdoctor