Abraxane
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mediclisa, no I'm not on Avistan or Zometa as I developed ONJ after 6+ years of Zometa so they discontinued it. I wish I could say the side effects get better with time, but the fatigue goes on and on. I think my desire to push through it has increased because I don't want to miss out on anything fun. I try not to plan much right after dose 2 or 3 but otherwise, I nap when I need to. Other than being bald, fatigue is my only other major side effect. I already had Neuropathy so I take a hefty dose of Gabapentin (2400mg a day).
lisa, I go back and forth between diarrhea and constipation. Between the chemo and twice daily Augmentin for the ONJ that can cause diarrhea, and Fentanyl pain patches that cause constipation, I think it's a balancing act! I've gone from not making it to the bathroom with diarrhea to being impacted!
Robin, I don't have nose bleeds, but my nose runs like a faucet from the time my feet hit the ground in the morning until I lay down again. I need to take stock out in Kleenex.
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I have several nose bleeds a day with blood clots, and my nose is very, very dry in the morning. I get tired of holding it, stuff tissues up my nostril and leave them in, they seem to stop shortly afterwards...before I have to leave the house. I had them when I had a taxol in 2015 as well. I was started on Avastin, but had the nosebleeds prior to starting it. I live on Claritin and Sudafed
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z and others, regarding protein consumption to increase WBC, my cousin learned that eating salmon helps to increase WBC so quickly. Her weekly Abraxane was on every Friday, and she usually took blood test on every Wednesday then used the result to get Abraxane prescription on Thursday. There’s a week that she did blood test on Wednesday and her WBC was on border, but she did not do anything except for eating 8 pieces of salmon sushi. On Thursday her doctor did not like her Wednesday WBC result and made her test again, the new test result showed her WBC went up and good for Friday Abraxane. One thing to mention is that drinking fish soup does not help so much as eating fish, instead of WBC, her uric acid went up if she only had fish soup. Hope it helps.
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SusanR - How is the Gabapentin working for you? I was on 600 mg. and weaned myself off. Does it take 2400 mg. to get you through the neuropathy? I am going to have to go back on it - I can't deal with it unfortunately - I'm to wobbly with feet and fingertips very painful. 600 mg. took off the edge - I'm curious on your dosage. I also have a runny nose and have been using Flonase, switching Claritin and Zirtek weekly. My MD told me to be careful with the Flonase as it can increase nose bleeds. I don't have the clots that some of you have, but do have some bleeding. I also get Neulasta after Abraxane and the MD said that it will increase WBC's which will make more histamine - hence the need for the allergy medicine. They are predicting here a record season for allergies. Why not!
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So I had my cat scan Friday and have not heard a word. I usually get a call. I am really starting to fret. My onc appt is Thursday. This disease just robs us of any joy at times.
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mediclisa, yes the Gabapentin does help the neuropathy most of the time. Sometimes, just wearing socks will set it off and the burning sensation is horrible. I can't imagine what it would be like without it. I'm fortunate that this high dose doesn't create too many other side effects. My Internal Medicine Doc has said I could go up to to 3600mg if needed, but things are tolerable for me at 2400 so even if I have some electrical shocks now that I'm on the Abraxane it still feels doable.
lisa, I hope you hear good news on the CT tomorrow. The waiting game is cruel really, and you're so right, it robs us of our daily joy!
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SusanR - I started it back up last night the original 600 mg. Will see how that helps. Glad to hear you can tolerate the high dose in case I need to go up. I don't want to stop the chemo and switch because of the neuropathy. I am finally having less nausea with the Olaparib - that took 5 weeks and am tolerating the side effects with an occasional opioid for the bone ache with the Abraxane/Avastin. Lisajo6 - I hope you hear soon and maybe it's just because they are busy. I have my Pet/CT scans done right away in the morning and have the Radiologist do a fast read. My appointment is about 3 hours later and my MD gives me the results. There is no way I could wait more than a day. To stressful and the waiting game is cruel. Unless you are going through it, people don’t understand. Iwould see if the next time that option is available. I have to wait 3 days for my CA 27/29 and that alone drives me crazy. I am hoping for the best news for you today. Lisa
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Had my second treatment on Tuesday. Yesterday was good as expected, but I was scared of what today might've brought. My MO gave me decadron to take for 5 days post chemo to help combat the severe muscle pain I had last week... and what do ya know!!?! No pain today. Maybe he knows what he's talking about 😉!
I have had heartburn off and on all day. Annoying, yes, but nothing I can’t handle!
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switching to Doxil. I asked my onc if I would be around for Christmas-he wouldn't answer🙁My liver is the big issue
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Swess, glad to hear it. I take Decadron before my treatment. This week’s side effects were rough. I am going to see what he thinks about 5 days post treatment. I wonder if doing the treatment 3 weeks makes a difference. Lisajo6 - I am so sorry Abraxane didn’t work for you. Have you been on it long enough? Taxol took 6 months to work on all my bone, liver, lung mets and then stopped working, but I only have gotten bone mets back, which sent me to Abraxane/Avastin and Olaparib. I have been on Abraxane since January with no increase or decrease in TM’s since scan in March. He said we need to wait to see if the new combo works. I am hoping Doxil works for you.
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Lisa - we'll be comparing the long term effects of doxil and abraxane next January. I am very interested in how you do and expecting the best.
Swess - great news!!! happy dance.
>Z<
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I was diagnosed with strep throat this morning and started antibiotics today. I'll have 4 out of 5 antibiotic pills under my belt when I start my Abraxane IV on Monday. The IV nurse says this is not a problem. Curious if anyone has dealt with this.
>Z<
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I have not had abraxane for two weeks and I still feel awful. I sleep all the time and today I puked my breakfast up and it had a lot of acid and bile in it. I have all but lost my appetite. My liver panel was fine except for my ASt was elevated into the 70's. I do have gallstones, but no pain. I start doxil Wednesday. If I am going to feel like crap the rest of my life I would rather die
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Lisajo, I am truly sorry. Your post breaks my heart. I wish I knew something I could say to make it better, unfortunately I can only send love.
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Has anyone had their hair start regrowing while on Abraxane? Mine is....also have eyebrows and eyelashes coming in where they are missing. We've lowered the dose 2 times due to neuropathy starting in fingertips.
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KPW3 - The lower dose could reduce hair loss. I would call it a win. That said I'm new to this. Haven't lost hair yet, but only two weeks into the treatment.
Symptoms from Abraxane are mild, but I do have problems with impaired wound healing. This is the root of a nose bleed and it was getting worse. We had a nose bleed discussion earlier and I want to share what helped me ... a $2 bottle of oxymetazoline hcl .05%. This is a nasal decongestant recommend by my resourceful primary care physician. It's a vasoconstrictor. It closed up whatever blood vessels were bleeding after a few sprays ... and whenever I start bleeding even a little it stops it immediately now.
My PC used to be an emergency room doc in the hospital I go to. This hospital has no serious record of "re-admissions", the code for when you get a nasty infection from being in the hospital. Nonetheless his first concern when I mentioned the problem with wound healing and the bloody nose was cdiff infections. With me going to the hospital weekly, he wants me ON TOP of the nose bleed. He also prescribed a prescription anti-bacterial cream to put on anything approaching an open wound before I go the infusion center. He wants a band aid on all wounds and anti-bacterial ointment. He wants the same treatment to the infusion site after I leave (they just put a band aid).
Watch those nose bleeds and those wounds, ladies.
Take care
>Z<
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Oxymetazoline is the active ingredient in Afrin. The unbranded versions are generally a bit cheaper.
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Haven’t felt great the last few days. Just kinda shaky and weak, a little upset tummy. So grateful to have had good, pain freedays following last treatment, I don’t want to wallow in this “I don’t feel good” crap, but here we have it. I don’t feel good. And tomorrow is treatment day...
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Swess,
i know exactly how you feel. I quit abraxane almost three weeks ago and am still dealing with side effects. Drink lots of water and rest. if you have a script for zofran use it. i am so sorry and wish you the best possible results. I am on to doxil. ugh.
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Here's a report on my first cycle of Abraxane. The normal weekly dose is 100mg/m2 which translates to 180mg. Initially I got 130mg, or 70% of the normal dose. I pushed to go back up to the full dose this first cycle, so I've had 130mg, 180mg and finally 180mg yesterday. This is a low weekly dose of Abraxane and effectively Low Dose Metronomic. One can continue LDM as long as side effects are manageable. For people who are on it for a long time the limiting factor seems to be neuropathy.
After two doses, my WBC have tank. I started at 8.9/uL, dropped to 5.0/UL the following week. Yesterday, before my 3rd IV, I was at 2.2/uL which is below normal range (<3.2/uL) for the lab we use. It was quite a push to get the doctor to give me the full dose or even allow the IV to proceed. But we proceeded.
One piece of the low blood count is that I got strep on Thursday and I've been taking Erythromycin since Friday and that will lower WBC. Another piece of it is that I am fasting 2.5 days before and 2 days after the infusion. WBC counts will be low at the point in the fast when they do blood tests before a chemo IV, which is day 3 of 4. One of the benefits of fasting is that it causes autophagy of WBC... in a starvation mode the body starts eating old and broken parts of WBC. Then when you stop fasting, you WBC stem cells get hyperactive and generate a surge of new WBC's that are more effective than the ones they had for dinner a couple days before. However, while you are fasting WBC drops. In bloodwork pre-abraxane, fasting caused a 10-20% reduction in WBC count at this point in they cycle.
The final piece is that my effective dose of Abraxane is probably pretty high. With only 40% of my liver functioning, the liver is going to metabolize Abraxane much more slowly. It's going to stick around longer at a higher effective dose. That's going to kill off WBCs. The cumulative effect of limited liver function/high effective Abraxane dose, is that fasting and anti-biotics were really low WBC on Monday.
Overall my bloodwork after 2 weeks of treatment was not great. Bilirubin has dropped from 2.8 to 1.8, but ALT and AST are rising slowly, maybe 10% or 20%. Knowledgeable BCOers have told me these are fuzzy biomarkers, but one would like to see them drop or stay constant. My acetites are definitely better but not a lot. My liver is NOT getting smaller and still painful. Less sharp pain and more of a dull pressure. I get an increase in pain after treatment and today (the day after). I've heard people post that pain did not decrease for a while on chemo even though, with time, scans showed that the chemo worked. This is logical to me. I have only 40% functioning liver trying to kill off, repair, and replace the other 60%, which is all tumor tissue. One can imagine that it takes both time and space to sort that all out. Inflammation should be an issue. I've had my 3rd treatment, but we're really only 2 weeks into chemo treatments. I am still a little concerned that I am not getting an awesome response to Abraxane. I am curious how the response played out for others.
The silver lining of this is that the local MO prescribed Neulasta on Monday. Neulasta is a granulocyte colony stimulating factor to increase the WBC. I am the first person to challenge any piece of the standard of care, but these growth factors are an important*. The timing of the Neulasta is a little tricky. You don't get the shot on the day of the chemo because the Abraxane kills growing cells and you don't want to stimulate WBC growth when the chemo is present in high concentrations in your body. Normally they do it the day after the IV, but I asked to wait two days since we suspect that Abraxane is in my system longer. If all goes well, I'll be begging for Neulasta every cycle.
I am not getting any pre-meds ... no steroids, no anti-nausea. Abraxane side effects so far are limited to poor wound healing and bloody nose and serious reduction in WBCs, possibly an increase in liver pain due to inflammation and a twinge/sore on the tip of my tongue. I am also getting brief periods of burning scalp which is the pre-cursor to hair loss. So far my anti-inflammatory conditioner has stopped the burning. Whether hair loss is reduced is still to be seen as it's too early for hair loss.
Hugs and support to everyone.
>Z<
*Edited out a comment here that Nuelasta has no significant side effects as someone PMd me to tell me she has severe joint. I know little about taking the drug, but the concept of stimulating WBC this way is well researched and certainly a reasonable option.
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Z, just gotta day that I love the way you totally deep dive into treatments, theories, expectations, etc. the knowledge you share is so valuable. Thank you!
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Z— you astound me with your knowledge and understanding of all these very complicated procedures and medications. Thank you for sharing with us this useful information. May you experience a long lasting positive response from Abraxane. You are in my thoughts, heart and prayers.
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Z, I too just had my third treatment of the first cycle. The only issue I’ve had was severe myalgia that first week. Last week I used decadron and had no pain, but over the weekend I had a little nausea/yuck feeling. Not sure if that was the chemo or not. Today was my third. Every lab looks good, no issues with any blood work. As a matter of fact, if we went by my labs, we’d still not know that I even had cancer. My tumor markers as well as CBC and all else has been totally normal the entire time. Weird, I know. I do get an anti-nausea, steroid and Benadryl as premeds. The Benadryl was added because at my second treatment my arms started flushing. It doesn’t bother me to get it so we just decided to add it each time. Still haven’t experienced any hair loss, though I’m sure it’s coming. I hope so much for abraxane to help alleviate your pain and get the cancer under control...
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Thanks guys. Blood work next monday is a big deal in my oncs mind.
z
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Z - your postings help so many of us. Neulasta helped me during my first round of chemo - I got shots in my stomach. What are your TM's - or do those show up Monday? On full dose Abraxane, my CA 27.29 went down by 1/2 the first month, and 1/2 the second month. That helped us know A-train was working, and they rose when it stopped. Watch out for neuropathy. Your fans are rooting for you to do well!
(()) Claire in your corner
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Z - So I have gotten 3 doses of Neulasta and it is "stuck" to my arm and then the medication is injected 27 hours after the chemo. The only difference I have noticed is more of a runny nose and drainage as Neulasta does increase WBC's which increases histamine hence the allergy type symptoms. They said here in MN we are going to have a record year with Lots of pollen activity, soallergies have already started for people. I do not have any joint pain and am still working full time. I am going to try the fasting before my chemo next Friday and for 24 hours after chemo. I would have to build up to what you are doing - not sure I can start with that. Interesting lalady1 that your CA 27/29 went down during your first months with Abraxane. My TM's have held steady and in March new mets - I personally don't think it is working for me, but my MD wants to wait until the June scan - hence why he added Olaparib in March. I will have labs drawn next week for the CA 27/29 - maybe chemo just takes a while for me. It took Taxol 6 months - did such a great job then another 3 months quit working. I am hoping Abraxane is the ticket for me, but the neuropathy is getting pretty hard to manage. My hair is growing back on my legs - not my head! I haven't seen my eyebrows since 2007 so nothing new there. Lisa
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Mediclisa -
Starting with the shorter fast is absolutely the way to go as the first fast can be hard. The hard part is the transition from glycolysis which happens for me in hours 24 to 36. Don't plan anything complicated on day 2 like a soccer team end of year event while your husband is in Geneva (like I did). That said the third fast ends tomorrow at 9 and it was relative breeze. The fasting community says that by day 4-5 you will feel fine and even energetic. This seems to be true for me. This time I added an extra day for a total of 2 days after the IV to allow the Abraxane to clear. That made today day 4 and I was fine. I could easily keep going on the fast given the way I feel now but I have to balance fasting with getting enough calories. The group whose work I reading limits fasts to 5 days and tomorrow morning will be 4.5. They don't see a need for a longer fast to get the benefit.
I amazed myself today by making grilled flank steak, pasta and broccoli for my family. I had to call my husband in to test seasoning. The first fast, hanging out around food would have been impossible. It's the transition off of glycolysis on day 2ish that is hard, but with repeated fasts it happens more quickly and it is easier. Interested in how you do.
>Z<
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It really is the gift that keeps giving, no? After I fell on Thursday I knew to take it easy on Friday and Saturday. I had minimal lower back aches. On Sunday I went to the grocery store, and buy was that a mistake! My back hurt so bad that several times I had to just lean on my cart and take really deep breaths. Wasn’t sure I was going to make it through checkout and back home, but I did. My back hasn’t recovered yet and to add salt to the wound, now my lower joints... all of them, hip, knees, ankles... hurt so bad I can barely walk! All I have for pain is Advil and so all I can really do is rock back and forth hoping for relief.
This is my week off, damn it! I’m supposed to feel good
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I am leaving the Eribulin train to join the Abraxane train. Would love to hear people's experiences with side effects.
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Welcome, tennille. Unfortunately we’ve been a really quiet group lately, but I’d love to see that change.
I’ve had three rounds (one cycle) of abraxane so far. I get 3 weeks on, one week off.
Week one - day 1 (chemo day) I felt fine. Day 2 - I felt AMAZING. I had gotten decadron and it apparently kicked in. I was unstoppable! Days 3-5 I had severe muscle aches. Wasn’t sure I was going to “make it” if this was how it was going to be. Day 6 - thank goodness, I was back to normal.
Week 2 - I told my MO about the muscle pain and he prescribed decadron to be taken for 5 days post chemo. It worked wonders. I never had that really amazing day from week one, but I felt good every single day. Better than I’ve felt since my stage IV dx. Days 5 & 6 I was a bit tired, though.
Week 3 - much like week 2. I’m really starting to enjoy life again. Until... I slipped in the rain and fell flat on my ass on Thursday. I took it easy for a few days because my back hurt, but then all hell has broken loose.
This is my off week, week 4. My lower limbs have been killing me! Severe joint pain. Probably not related to the fall at all, but started right after. Got pain med rx yesterday, thank goodness. Now I’m scared again... could this be a new side effect for me? Four weeks in? Because THIS cannot be my new normal.
Oh, and yesterday (day 22) my hair started falling out. Not in clumps, but if you touch it, out it comes. Fun times, no?
But seriously, until the joint pain, I have really been enjoying life since starting Abraxane. I didn’t even know chemo and enjoying life could be used in the same sentence until now!
Good luck and let us know how it’s going for you!
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