Abraxane

Padiddle

Jo:  I see on your signature line you started Taxol 1/10 and then Abraxane 1/21.  What happened on the Taxol.....was a short time period?  Just curious.  Jean

ForestDweller

Hi everyone ....I got afew days behind schedule but finally started Abraxane on Friday.

I told my doctor about the schedule all of you are on and he was very agreeable. So I'm doing 3 weeks on/1off without premeds.

Yesterday I was feeling a tiny bit wonky but this morning I'm great . I drank lot's of water and walked twice yesterday.

As I mentioned in an earlier post my doctor mentioned that my WBC might not cooperate. In the last couple of years it has not once been in the normal range. He was quite shocked to see that it was 5.2 and the ANC 3.3. This is really great for me.

I had used an herbal supplement for only 11 days to get to these numbers. I brought him the clinical trial report where they had gotten excellent results for patients on a different chemo. My doctor approved it for me to use while doing Abraxane.

I have mentioned this herbal supplement to another sister here before and was chastised by another member and felt like a looked like a quack so Im reluctant to mention it again. Anyways I'm hopeful that my WBC will cooperate.

shelcat50

I started Abraxane yesterday. I'm just wondering how many people have lost their hair. My doc said some do and some don't. No real problems yet last night or today. Face flushing today. Some cramps last night.

Mel26

I have been on Abraxane treatment since April, and have lost my hair.

I'm sure that is not the answer you wanted to hear!

Lauralind5

I'm wondering that as well. I had my first infusion last week I'm on an every 3 week infusion. I lost my hair on taxotere, it started growing back during a 4 week break then continued to grow on taxol. I've switched to Abraxane now so wondering what's going to happen. 

auroaya200882

Started Abraxame July 9 three weeks on fourth week off. Hair started falling and hurting on week 3. Felt miserable doctor changed schedule from 3 on 1 off to 2/2

Lauralind5

well its happening, almost 2 weeks from infusion, my hair is falling out. Sigh. Im at the office todayand its coming out in clumps.

sueco

Glad to see a chat room covering Abraxane. First infusion was Aug. 20. Felt fine for two days and then wow day three was awful. My joints and muscles ached and hurt for a day. I read day 3 is bad. Nurse told me first five days are the hardest and she was right. My med info sheet said achs and paint of joints, etc., can last 4 to 5 days. Mine fortunately were only real bad on day 3. Funny thing though - at noon today would be the end of five days. I had two naps this morning and am now feeling almost normal. Except the neuropathy I am feeling in feet and hands. I cant wait to feel good enough to get out of the house. When I did not want to go out to dinner this weekend my husband knew I did not feel good.

Lauralind5

Sue my pain lasted about 21/2 days then joint and muscle aches. It took about a week and I've had energy. Not running marathons but at least most days I'm able to do something. And I've been working this week. Other than my hair falling out its been mostly doable. I'd like a way to stop that pain though ! 

auroaya200882

I too felt horrible the first three infusions and then my doctor switched me from once a week for three weeks one week off to two weeks on and one week of

Isy

hi ladies,

I've just had my third treatment of Abraxane I'm on one week on three weeks off which means I get quite a hefty dose. All my hair went quite quickly though still hanging on to lashes and browsso far. The leg pain was unpleasant but only lasted a couple of days and got better when I stood up and moved around. I go from constipation to mild diarrhoea through the three week so it all balances out in the end! Fatigue not too bad and i find keeping active helps. The worst side effect for me is neuropathy in fingers and toes which Onc is quite worried about so may want to adjust the dose next time. Other tthan feeling a bit 'out of it' some of the time it's not been too bad for me. The best thing is the infusion time is really quick, only 30 mins, I hate sitting plugged in to that drip and really feel for the people who are there for hours.

Hope you all do well on it. My first scan is in a week or so and we'll see if it's having any effect

sueco

Isy: I saw my oncologist yesterday. You mentioned dose adjustment. She said next time my dose will be reduced by 20% so neuropathy will not possibly become permanent. Yes, you said you are staying active and that is the key. Yesterday was first day out in a week and I could not believe how it helped me mentally. She said I must start doing things like gardening again but just cut back on the amount. Gee from her questions she must have patients spend the days in bed. She was thrilled to hear I put makeup on every day. ha.

shelcat50

I've had 2 infusions of Abraxane now. I've been getting a fever on the 2nd and 3rd days, highest had been 100.4. The joints in my hips and knees are hurting. Enough I've been down for a couple of days. Had nausea and vomiting on 6th day after first treatment. Doc said it might have been a bug but could have been a very delayed reaction. I've been extremely fatigued. Slept off and on all day today. I had neuropathy before even beginning so watching that closely. It sucks bad! How does everyone else feel after 3rd infusion? I have that Wednesday on my birthday and see the nurse practitioner that day.

auroaya200882

shelcat sorry you're feeling so bad on Abraxane and yes it could be a delay reaction. My first three treatments were horrible se's but after my doctor switched my schedule from every week for three weeks one week off TO every week for two weeks one week off the symptoms are more manageable I still feel very fatigued and the neuropathy is there but at least I don't have the nausea. If this is really bothering you you could ask your doctor for a lower dose or a switch in schedule. Anyway I hope you feel better.

Auroaya

Isy

I guess we all react so differently don't we. One thing my Onc said was that there would very unlikely be any nausea with Abraxane so maybe yours was due to something else shelcat? My dose was reduced by 25. % this time. No pain in legs at all and hair loss reduced but the one side effect we wanted to avoid has stayed the same and that's the neuropathy. In fact it's probably a bit worse and starting to feel it more in my feet. So maybe we'll need to look at changing the schedule. I chose the once every three weeks because I thought I just couldn't bear to go to the hospital more often than that but maybe I'll just have to grin and bear it.

Hope you're still getting out and about auroaya - and getting stuck in to the gardening. Keep well both,

Lauralind5

I had nausea with the Abraxane, that's on the side effect list as well. It was very noticeable for a couple of days then it was only every now and then for about a week or so. Im getting infusions every 3 weeks, so Im due for another infusion Thursday.

Isy I started out with a dose reduction, and Im going to ask for an even smaller dose this time. I lost all my hair this weekend but my neuropathy is worse and the leg pain OMG. It was unbearable on days 3-4 but I still have aches in my hips and esp my knees.

auroaya200882

Hi everyone tomorrow is my second infusion on my third cycle and then I might get a break in order to prepare for hip surgery I'm also getting radiation for my spine but that ends tomorrow. I'm sending everyone positive thoughts and I hope you have less se"s.

Auroaya

Lauralind5

Auroaya, good luck !

petjunkie

Hi Everyone,

I start Abraxane tomorrow and am thankful for all of you sharing on this thread, it helps me to know what possible side effects might be. Back when I was first diagnosed Stage IV (six years ago!) I did about 9 months of Taxol. I sort of remember that, but I think I've blocked out how hard it really got towards the end.

I'm getting ready with soft hats and pillowcases, etc. I've been on one chemo or another for all of these years, so I'm pretty worn down already. My last treatment was Kadcycla (T-DM1) and it was getting really rough here after almost 2 years. I started to develop an allergy to it and my lips and tongue would swell up and sting for the first few days. My onc said that's it-- time to move on. Turns out I had progression as well, so it was time.

Sorry that I am rambling. I'm feeling a little anxious about a new treatment plans. I'm most worried about neuropathy. I had it a little in my feet during Taxol, but never my hands. Do any of you take L-Glutamine to prevent or treat existing neuropathy? Anything else you've tried?

Thanks!,

Karen

Lauralind5

Hi Karen, good luck tomorrow !! Ive had my first infusion of Abraxane, a hefty dose as I get an infusion once every 3 weeks. I had some nausea for a few days and I had horrible bone pain in my legs on days 3 and 4. My hair fell out almost 2 exactly 2 weeks. I already had some neuropathy from Taxotere and weekly Taxol and its ever so slightly worse/different on the Abraxane so Im sure I will get a dose reduction on Thursday. Otherwise my appetite was down (which is no problem!) and the taste buds have been hit or miss. I did chew ice during infusion to help from getting mouth sores and too much taste issues and it worked all but part of my tongue I must have missed. Will do better this time!

sueco

I read that for breast cancer every 3 weeks. I am already dreading Sept. 10 for second infusion. I do feel neuropathy in soles of feet but so far I can still walk with balance and no pain. I struggle typing as my pinkie and next finger are so numb I cannot use them. I have been lucky with no nausea. I did find this weekend that just getting out with my husband for a drive helped me feel better.

Read - eat well balanced diet. A massage will increase circulation. Acupunture will help pain and restore balance. Yoga or stretching help. Wear soft shoes and support stockings. Our newly built cancer center now offers massage but no call yet from someone to set me up with an appt. Ordered a soft turban/cap from headcovers.com. This one the site said if you order just one head cover buy this one. Did get a free wig thru the American Cancer Society. They said younger gals prefer scarfs and turbans. Still have hair but scalp hurts in places. The hair falling out I am not prepared for.

Lauralind5

sue, have you tried acupuncture? I get a massage every 2 weeks and have gotten reflexology on my feet weekly lately. Its been kinda like wrinkle cream, if I don't have it done, will the neuropathy worsen further? lol I do have the number for a local acupuncture place that will do 5 free sessions to cancer patients. I was also given the number to a new therapist, I've been thinking theres not a lot of difference LOL (joke)

After Saturday night, Ive gone back to my hats and baseball caps, though with cooler weather on the way, the straw fedora will have to be replaced. Its cool though, I use head bands around the hat that match what I'm wearing. At home usually a bandana as my head gets cool with no hair !

sueco

Lauralind: Never had acupuncture but was given a name of where to go by a nurse. Have not called yet as this is first week I feel up to getting out. Then darn it chemo is next week and I will feel true fatigue for another week. Do wonder about reflextology which I had years ago and have a name of someone to go to. When I was on Xeloda, my feet were red all over and cracking which is a side effect and sore. I read that chemo damages your small blood vessels or something like that so did not want my husband to even massage my feet. What are your thoughts about the pressure being put on your toes and feet? With Abraxane I feel more numbness of bottom of feet.

Washed hair yesterday and ran my fingers thru wet hair and was surprised to see the hair that was on my hands. So I bet by next week it is all gone. It drops just a few hairs off and on and that drives me crazy as the hairs tickle my shoulders when they land.

Lauralind5

Sue I haven't called yet. But I might. As far as my feel being massaged it mostly feels ok. It feels good right after then seems like the next day they feel worse but then after that they are better for a few days.  Overall I give it a yes.  

Is all your hair gone now?  

sueco

Lauralind5: Yes I have lost most of my hair but have enough wisps of hair that I don't put anything on my head indoors. My husband said I have had to look at him bald for years so he can look at me bald and still be in love. I just cant stand anything on my head indoors with warm weather. Crazy but I avoid putting anything tight on my head fearing it will pull all the hair out. For now I like the loose fitting nylon hats with a rim around. I have one that says Columbia so looks sporty vs. a turban. Had chemo Thursday and felt awful last few days as I guess steroids wore off. At least this being my second infusion I know week one is the hardest. Read more about acupuncture being so good for neuropathy so will make an appointment for second week. Glad you enjoy your massages.

Lauralind5

Sue sorry it's all gone. Sigh. Mine feels like it grew a little but then I had another infusion ( I'm on every 3 week cycle). But this time I had a 50% reduction in dose. Im not sure if these little bitty hairs will fall out now, it's about the right time in the cycle. I can tell a difference overall in the dose reduction however I got my grandchildrens back to school cold so I haven't been feeling as good as I had hoped. 

sueco

Lauralind: Have an acupuncture appointment Friday and a massage next Monday at my cancer center. Did you do acup. yet? I believe the massage is $50. Our town built a very nice new cancer center and now offers massage but had to wait a month to get in as the two gals don't come every day. I have so little hair now I cant stand even being without a soft cap at home. Had husband shave most off but still kept the long hairs on top of my head that I comb forward so there is a little hair to see when I wear a cap. I ordered a second color of the sleep cap at headcovers.com as it is so darn comfortable and even stays somewhat on my head when I lay down for so many naps.

hawksfansarah

I know this is an old thread, I just finished my Abraxane journey, and thought if anyone else was interested, I would share my experience.

I started Abraxane in March 2015. I finished it August 2015. I've had it pretty much full strength all the way through (except one day when I had a 10% reduction).

Side effects: hair loss, fatigue, nausea, constipation, hospitalized for pulmonary embolism, hospitalized for partial bowel obstruction, lost ability to walk, lost balance due to severe neuropathy, severe muscle wasting, severe swelling in feet (doubled and then TRIPLED in diameter), severe facial swelling, fast weight gain (10 lbs a week). Toward the end of the treatment, vomiting. Also, severe acidity. And oh yeah, liver damage and liver cyst.

When the doctor stopped treatment: toxicity of abraxane was too high, caused severe and hopefully not permanent damage to feet, went from walking on my own two feet normally to using a wheelchair, having trouble sitting and standing using the toilet, impossible to sit on the floor, could not sit on chair for too long.

Right now, after five weeks off, my feet are still not only numb, but they have that constant feeling that something is stuck to the bottom of the foot (even though it is not). I cut the bottom of my feet once and didn't feel it at all. Tracked blood all over the kitchen and carpeting before I noticed.

I have been in physical therapy for a few months now, and am finally able to walk for a minute or two at a time max without a walker.

I saw a neurologist who said that the abraxane killed so many nerves in my feet that if I couldn't walk by December with physical therapy, I would never be able to walk again. The neurologist also said the nerve damage is permanent. What the neurologist and the oncologist said is contradictory, but I would believe the neurologist because his specialty is nerves.

My advice to you: STOP BEFORE IT GETS TO THE POINT IT DID WITH ME.

My doctor felt the damage was worth it because the tumor markers were going down on abraxane.

Have you heard the phrase, "the surgery was successful, but the patient died." That's me.

Oh, good things about abraxane: I started when I had water in my lungs. It filled up 3/4 lung in less than a week. I had to have a lung catheter installed, it was that bad. On the abraxane (once a week, max dose), the fluid was gone in one month.

Sarah

Isy

my god Sarah that's awful! amazed your onc kept you on it with all that crap going on! I was taken off it after three treatments because of the neuropathy which started pretty much as soon as I started the treatment. Neither of us wanted to run the risk of it becoming permanent and in any case it wasn't working at all on shrinking the tumours so I've moved on now to the gemzar/carboplatin combo. Some people seem to do really well with abraxane and my onc was really disappointed that it did nothing to shrink my tumours as he was sure it would but it just goes to show that you just can't make any predictions with this horrible disease. I really hope things improve for you and that you move on to something more manageable.

shelcat50

Does anyone else get fevers after treatment?