Abraxane
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I had increasing pain and then out of the blue awful Lymphedema. We did a CT, which showed that in the 3 months on abraxane, the tumor in lymph nodesbehind my pec muscle had increased in size and is now possibly involving the actual pec muscle. I’ll start radiation to this tumor in the next week or so.
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Hi ladies! Will be starting Abraxane as soon as they decide what to do with the spot on my brain. Totally freaked out at the thought of doing iv chemo while living alone. Ibrance and Faslodex failed after seven rounds or maybe it just never worked. Brain mri tomorrow and liver biopsy Tuesday( realized this morning I forgot to stop taking my baby aspirin!!! Geesh!!!
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Hi Gracie - we are hanging with the same crowds these days ... Abraxane has been easy and effective for me. Hope it is the same for you.
Lisa - I am in Minneapolis as I write headed to Mayo for 2 days to develop a plan to treat my brain lesion of unknown malignancy (too deep to biopsy). In and out this time, I come back to Mayo again later to get treatment ...
I seem to be responding well to Abraxane since starting 2.5 months ago. My liver markers were crazy, now almost normal. My liver is normal and soft according to one oncologist. The liver is clearly smaller as it was jutting out of my abdomen 3 months ago. My other onc seems to want to keep me worried. Probably doesn't want me running off to Japan. He will not call it normal but rather moderately enlarged... so not sure how to read the liver size issue. I have a liver MRI on Tuesday that should be less subjective.
I continue to exercise during and immediately after the IV and fast 2 days before and after. The exercise is likely exacerbating peripheral neuropathy. The balls of my feet and my 4th toes are numb, my legs are weak, my calves are cramping. However, if the MRI is good I will take a response over side effects as my liver mets were severe. Fasting and nutrition is definitely helping as I feel better than I ever felt on hormone suppression. On most days, I feel better than I did before cancer.
Given my symptoms, my overall well being and some positive signs in the bloodwork I'm hopeful for a decent scan but no real answers until I see the report.
Z
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Z, I feel that I am in really good company!!!
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Abraxane went better than I expected too, minimal SE’s, I had it weekly (bad taste on days 2-4 about 1/2 though, bone pain on day 5 and D on day 6). The food was tough for me, it made me very said that everything tasted like a gym bag but Chinese takeout helped and I lost 25lbs (already overweight). Hopefully, you’ll catch a break and it’ll be effective and easy for you too 🙂
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Thanks Mae, I sure hope it's easy on me but hard on the cancer☺👍
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Z, hope your MRI goes well tomorrow and is clear! I have my first liver biopsy tomorrow. I know I shouldn't be nervous about it but am scared out of my head!!!
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Gracie - someone is about to stick a needle in your abdomen and pull out a chunk of your liver. why wouldn't you be nervous? any sane person would be nervous. we just pack our nerves up in a bag and drag them along with us and get it done ...
>Z<
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Yep, did that this morning Z! 😊👍 theycouldnt get to the spot on the liver so they picked a new spot on the right hip. Hope they got what they need
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Lisa,
I have my 2nd treatment on July 2nd. Dr. gave me neulasta shot on June 12th. Been in severe bone pain since then. Today it is only the knees that are hurting. I was put on morphine ER. Dilaudid 2mg, and Ibuprofen 800mg for the pain and it only brought the pain level down from a 10 to a 7. Today I'm at a 5. It has been 2 weeks now. No hair loss yet.Do have diarrhea slightly but i think that is from my laxative i'm taking. I am slowly backing off the laxative one pill per day. Steroids constipate me severely and takes me about a week to get going again. So the diarrhea is actually something I look forward too when it overcomes the steroid side effect. But I can't go thru that neulasta bone pain again. I'm going to ask my Oncologist to put me on neupogen the sister drug to neulasta. I know it is given over 3 days but the bone pain is a whole lot less for me.
I am sorry for the other abraxane people that it quit working for you. I've been thru that with so many chemo drugs I know the feeling. Abraxane is my last chemo drug for me. If this doesn't work, the dr is going to put me back on gemzar at a lower dosage to see if that will work with me. I was on it full dosage and was pulled off it the 2nd week. I am hoping Abraxane works for me. I have 25+ tumors throughout my body and bones and I'm not ready to die. My tumors are ER+ (3%) PR - HER/2 -. It is so low on the ER part that they consider it Triple Negative. My onco dx score was 64. So, my cancer is very aggressive.
One chemo drug that was working was capecitabine, but i had an anaphylactic reaction to it on the 3rd treatment so I was pulled off it.
Here is a bunch of (((((HUGS)))) for everyone!
-goose14
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goose14....when was the last time you had a biopsy? They may now find you are triple neg in a separate met astasislocation and then you could qualify for clinical trials for TNBC and could possibly show new mutations they could target.
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goose - I had a bad response to neulasta. I've declined the whole class of drugs since. I might agree to do it again someday if I am really up against a corner. However, relying on a fermented shitake abstract and fasting for the moment and doing well...
>Z<
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I was biopsied a year ago to the day. It is still ER+(3%) PR- Her/2-
The tumors I have now are not biopsyable.
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Had chemo today! The bone pain from Abraxane is starting to hurt. took advil 400mg and one 2 mg dilaudid. Waiting to see if they work. Those two drugs are on top of my Morphine ER 15 mg. Tomorrow I start the 3 days worth of neupogen shots. I am being switched from Neurontin to Lyrica for my numb fingers and feet. My hair started falling out last thursday and I'm almost completely bald today. Still have some hair but not much left.
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I’m probably starting next week
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First infusion of Abraxane yesterday! They gave me very little information what to expect a for se’s or when so I’m just kind of going off of what I’ve read in this thread. Any suggestions
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Hi Gracie, I have been on Abraxane since January. I have bone pain on the 4th and 5th day, ok with Advil, occasional Percocet. I usually take those days off if necessary. I had more mets come back in March so Olaparib was added. I had worseningneuropathy so for now, I am off Abraxane to see if the nerve damage will heal. I am on the 3 week regime. The side effects are very manageable. I still work two jobs. I am waiting for my new TM's which will decide if I will be back on Abraxane or keep with Avastin/Olaparib. I did lose my hair in the 3rd week, but I haven't seen my eyebrows since 2007, so that's ok. I wear ball caps. Good luck and I hope you will be on Abraxane for a long time with the other lovely ladies here. Lisa
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mediclisa, thanks for letting me know. Am hoping it turns out manageable for me too!
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Here is an update on me. Even switching to neupogen the bone pain has been out of this world. I found out why! I can't take Aleeve because it actually increases the pain well, the ibuprofen the dr put me on is doing the same thing! I stopped the iboprofen and stayed with my dilaudid and morphine ER and the pain went down from 10 to a 5-6 depending on the day. As far as hair goes... well it is just about all gone. It is wispy but in this heat and humidity I have here in Michigan I'm glad it is gone. I had to back off my laxative due to D, but now I'm the complete opposite with constipation. I struggle with Irritable Bowel Syndrome- Constipation version all my life and I just can't find normal. Today, I have my weekly blood draw. Will see if bloodwork is still dropping. Last week the white blood count was really down and the neupogen was still working. If it is down again this week, I doubt I will have chemo next week. I have lost my appetite and have lost 12 pounds over the last two weeks. That isn't good even though i have a ton of weight to lose. Dr switched me from neurontin to lyrica and I have to talk to the nurse today about it. I'm still waiting for the lyrica to work, my fingers are so numb I can't feel the keys on my keyboard anymore. My feet are pins and needles along the whole bottom of the foot. I think she needs to increase the dosage or have me take it twice a day instead of once a day. Another side effect i'm having is shortness of breath. I feel like i'm suffocating when I do any exertion or lay down. I think reading over this post I will call the nurse and talk to her. I really want Abraxane to work.
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Goose - I tried neupogen once when my absolute Neutrophils got to 1.1. In hindsight, my neutrophils were not low enough to require it and the neupogen was unnecessary. I should have declined based on the bloodwork. However, based on that experience. I will NEVER take it again unless I am seriously up against a wall. The bone pain and fatigue were too much. I've been able to keep going on Abraxane without it. You can get a lot done with mushrooms. I have a raw mushroom soup made of shitake and maitake mushrooms daily. Many ways to get your mushrooms, many options, if you look into it. At times we delay infusions.
I haven't had digestive issues in the past, but I do now with Abraxane. My theory is that Abraxane is effecting the autonomous nervous system like it effects my feet. Basically Abraxane is numbing the nerves that drive the digestive system. I have to do 30 minutes of yoga after each large meal, at least twice a day, to keep things moving. I also take probiotics, pre-biotics and maintain a high fiber diet. It's a project, but I've been successful.
I am also fasting 2 days before and after each IV. Fasting protects the digestive system and the immune system. Fasting is also an effective treatment for IBD. IBD may need to be addressed for you to have a long successful run on Abraxane. Abraxane can make digestive issues worse in my experience. When the digestive issues spiral, nutrition gets poor and you don't have a sustainable treatment. This is very serious. PM me for some references if you want to dive into the research on fasting and cancer/IBD. You can kill two birds with one stone ...
The chemo is effecting both my feet and my autonomous nervous system ... my gut doesn't move food along without two 30 minute yoga sessions per day after meals. Neuropathy, wound healing and cramping are all improved or eliminated by 60-90 minutes in a magnesium chloride bath. I have transformed my diet in the last two months to a festival of cruciferous vegetables, mushrooms and salmon. I am also water fasting around chemos. I feel good. Better on most days than I did before cancer, but the MRI has the real info.
MRI was yesterday, report taking a while to appear.
Whether the MRI report is good or bad, the question is always what next. It's not clear that Abraxane is a long term plan or not. I've got great examples of people who do abraxane/taxane for months to great benefit but the cumulative side effects are a problem. Some doctors feel 6-10 months is the max period you can get a useful effect. If I had an obviously good option, I would switch off Abraxane in a minute. Sure would like to digest properly and feel my toes again. However, hormonals aren't obviously effective for me and the immunotherapy/viral therapy options are experimental. Abemaciclib monotherapy is a serious option.
>Z<
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Goose, I'm so sorry to hear of your troubles. With the constipation - it's probably from the narcotics. My MD prescribed to me Amitza with helps with narcotic based constipation. It works well and is very gentle. I would give that a try. The neuropathy was the worst with the SE's for me. I have been off Abraxane for 8 weeks now and am starting to feel my fingers and toes again. I have tried everything from oils, massages to acupuncture to help the neuropathy and nothing has worked. My MD tried to talk me into taking Abraxane last week, but I felt I wanted another month off....will see. My taste buds are coming back also. My TM are still coming down slowly, so maybe the Avastin/Olariparib is working - I am hoping. I still find the fatigue from Abraxane tolerable. I am hoping you can find a solution. I also stopped the Neulasta like Z as the bone pain and fatigue was not worth it to me. I also had increased histamine problems. I am going to get a second opinion at the University of Alabama, where I did my study, to see what this MD has to say in August. He is the head of the Oncology Department and friends with my sister who is also a MD. Hopefully, a new plan in place for after my scans in September if the mets worsen. Will see. Take care and I hope you can get a handle on Abraxane. Check on the Amitza for the constipation - it really worked well for me. Lisa
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chug a chug achoo choo I'm climing aboard the a-train!
I am highly er+ pr- her2- (fish) diagnose 2016 de novo stage iv. I made 18 months on ibrance/Feara and then wham liver full of diffuse mets. Went on five month Xeloda and guess that failed, two spots got bigger. Messsed around about 7 weeks with no treatments going to university of Iowa for a second opinion and then Rochester Mayo Clinic for a third opinion. All this leads me to abraxane.
First dose today, needle in hand hurt like hell. They added a nausea med to iv that let to bad bone pain in my wrist and a super cold felling. Abraxane didn't seem to bother me. Of course I've only been out of the office a couple hours and one treatment, long ways yet to go.
Just thought the more we hear from people the better ideas we will get! I'm going to up my ginger tablets daily. I have taken one a day since the beginning and really have had no issues with any meds so far. I see dry nose and bloody nose is one thing as well that is an issue. I'm going to try a vaporizer every night at bedtime to keep moisture. Winter will be horrible for that bc we burn wood and that is a dry heat. I'm prob going to take Claritin everyday as well for the bone pain. I take the kids liquid 24 hour. I bought an off brand that did nothing for me so sticking now with Claritin.
Will keep posting as time goes on
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skitzblitz, welcome aboard! Generic (Ocean) nasal moisturizer spray worked well for me and while it’s a pretty tolerable chemo, it does seem to work well for many. Hope your ride is smooth and uneventful.
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Has anyone had a weird problem with their eyes feeling like you need to squint to see? It’s not bad, but I think I remember having a similar feeling with my original chemos in2007
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Gracie, I didn’t really squint but towards the end of my 5 month ride on the A train, my vision did get blurry. It go so blurry that I had trouble seeing if the color of the traffic signals until I was getting very close. It was scary but it eventually got better.
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Glad to know Mae....it's not at all bad at this point but more annoyinh!
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Anyone get the 'woozy' feeling and have any suggestions on how to manage it?
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Yes on that woozy feeling...seems to be worst in day three and four
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I too am having eye issues. I'm wondering if I should get glasses. I usually have perfect vision.
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so day one of abraxane was ok. Hard getting needle in my hand which was alot of pain. Then the nurse added a nausea med to the iv with a quick push and my wrist hurt so bad I wanted to cut it off! It was instantly freezing cold, so odd. I went home did laundry and dishes and vacuumed, more than I have done in days! I'd tire real easy, sit for about three min and up and ok again!
My liver is pretty bad so I haven't done to much the past month and was off all treatments.
Day two, I'm neither here no there. Achey, blah, seem to not sleep much. I took claritan to try to head off bone pain but didn't seem to do much. I did go to work but didn't really care to.
Day three, well I'm freaking out about not finding a wig in town and one place out of two doesn't call me back. Went to work, took Claritin, doing a little better. Need to sit a lot but not so much bc of chemo more the liver isn't so hot. I had concert tickets to Luke Bryan at a nearby fair and couldn't a sell them so wasn't wasting 300.00. Had to walk kind of far and then that is the most moving I did in a good six weeks. Made it through the wholeconcert and glad I went. Long day! Very tired by 1am still only sleeep about five hours and I'm Wide awake.
Day four, went out of town to buy a wig, glad I did bc this lady was awesome and spent over two hours with me! Lot of help and tips from her. Really achey, forgot the Claritin. Grrrrr.
I did get a light rash that started day two at the lower back. Then around chest the next day and a bit under my hairline. Feet feel a little numb but don't think they fully recovered from Xeloda!
Man I have a long ways to go yet! That is both good and bad.
Hope everyone else is doing well
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