STARTING TAXOL JUNE 2016
Started Taxol myself on 10th June, and have done one round so far. I did have a slight bad evening on Saturday in that all I could do was go to bed with anxiety, but I was fine the next day, and there was another day when I was overwhelmed with tiredness but got through the first week with no bother. I am doing 12 round of weekly taxol and my next round is tomorrow 17th June. Just noticed this evening the side of my left hand felt numb and I wasn't able to move my little finger for all of five minutes, just hoping this is not the beginning of Neuropathy and if it is I hope it doesn't get progressively worse. Would be interested in hearing from others who are starting Taxol this month and how they are getting on. Also, are there any tips for preventing Neuropathy other than icing your fingers and toes during infusions.
Comments
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Hi numb!
Please look into vitamin b12 for the neuropathy. Also I have heard that rubbing cocoa butter can help.
Good luck and thanks so much for starting this thread!
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Laura_Ingalls- thanks for that. I will get the b12 tomorrow. I had my second infusion this morning and all went well. Very tired now as I got the Benadryl and it makes me very tired. I was also up at 5.00 a.m. as I have to gravel to get the infusion and it takes and hour and a half roughly to get there. I was there at 7.15 a.m and out at 11.00 a.m. The infusion itself only takes an hour but you have to wait for blood results and then wait for the prescription to be sent up and then get a pre drip thing for about 30 mins. All in all they are very efficient at the Day Oncology ward. I am also living in Ireland so we have half our day gone now, where you are probably just getting up. Off to bed for a catch up rest and will get up later on for dinner.
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My nutritionist at the infusion center said to take B6 and B12 vitamins and to have 15g of glutamine twice a day for four days after treatment. I bought glutasolve packets off Amazon for easy measuring. I mix it with applesauce. There's no flavor but it's really gritty. I've also read walking is good for preventing it.
I'm really hoping I get my tastebuds back and am not so hungry all the time. I'm constantly searching my cupboards for food from the darn steroids and everything is mush to me so I'm never satisfied! I'll be happy not to have to take so many drugs with taxol!
Are you still having to rinse your mouth after every meal or was that just an AC thing
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Here's the pic of the glutamine packets I'm using. Also, I've read to wearing comfy shoes like crocs to keep your feet off hard surfaces.
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OAJ2013 - thanks for that, I will definitely get ordering that Gluaamine as I have heard on another forum that it is recommended, I will also look for Vit. 6 and 12 today. I never had tastebuds problems on AC (my tastebuds must be so well developed that nothing will knock them). I rinsed my mouth for a few weeks after the AC but found that the mouthwash aggravated my mouth rather than soothing it, so I then only rinsed it once a day. Now I don't rinse it at all and it is fine. I do still have the mouthwash to hand though just in case I need it.
I took 20mg Dexamethasone the night before my first 2 Taxols and I think I got 8mg of it in the infusion but nothing after the infusion. You can take an anti nausea if you need it, but normally you don't need it after Taxol. I didn't. Some people get aches and pains a couple of days after the infusion and you can take a pain killer if that happens. I had a slight ache at the back of my knee and hip but nothing that required a pain killer and it only lasted an hour or two and then it disappeared. I think if you already were prone to pains Taxol might exacerbate the pain. Not everyone gets them.
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Hi ladies. I had my first weekly Taxol June 6. My second on June 13. AC was pretty easy for me, and so far Tacol has had more SE. Joint/bone aches for two days, 2-3 days after second infusion. I'm on day 4 now and they're gone. Most worried about numbness in my face around my mouth. Like after going to the dentist and getting numbed. I hope it doesn't get worse and I hope it doesn't derail my treatment, as I understand it's a form of neuropathy. I'll find out more from my oncologist Monday. Also, I'm taking the Glutamine, but hadn't heard about the B6 or B12 yet. Will definitely start that. Do you have to be taking it in advance to be affective
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Ruby, I'm not sure if you need to have taken it in advance, but I'm sure it can't do anything but help if you start now. Good luck.
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Yesterday was Day 3 of the second round of Taxol for me and I did have a mini crash in that I had tightness in my chest area over my heart, to the extent that I was afraid to go out. I went to bed and took a Diazepam later on in the evening and this seemed to ease it out a bit. Today that tightness is gone, thank God. Just wondering do others get a day when they don't feel good on Taxol ? Overall, it is definitely easier than AC so far but kind of worrying if the effects are cumulative what can I expect in the coming weeks ?
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My mom starts Taxol on Wednesday June 22nd. I pray it is kind to her but kicks the cancer's a$$. Her side effects with AC were quite minimal and manageable.
I am going to ask the oncologist about her taking glutamine. I believe she already takes a B6 B12 supp.
Really interested in hearing everyone's experience.
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That's a good idea WeRwarriors, because my Oncologist didn't tell me to take glutamine or B6 or B12. So I am just wondering now that if it is a good idea why isn't everyone told about it.
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Found this on the net today. Unbelievable, and just after I bought Glutamine. It is going in the bin now.
Cancer cells use two major fuels, they use glucose and they use glutamine. Of the two, glutamine is the more powerful stimulant for cancer cell growth.
The Warburg effect is the fact that normal cells use both anaerobic and aerobic system, the Krebs cycle. The cancer cells only use the anaerobic system, it was thought. Glutamine can work the aerobic system and product a lot more energy. So if you're eating a lot of sugar and you're eating a lot of glutamine, you're really stimulating your cancer powerfully. So the idea is you want to cut down your glutamine intake. A lot of people are promoting glutamine as a way to heal the gut—the leaky gut syndrome. So, they're saying, take five, six, ten grams of glutamine. That is a powerful stimulant for degenerative brain disorders, a powerful stimulant for cancer growth. You don't want to do that. There's a lot better ways to repair the GI tract—they work better and safer and actually inhibit cancer.
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I am starting taxol (paclitaxel) on Friday. I asked MO about taking B vitamins and glucosamine and he said the jury was out and to please not take them until after I'm done treatment. I asked about icing for neuropathy and he said I won't need to on weekly taxol?! If I was getting docetaxel (taxotere) then I would be getting the gloves and booties available at the clinic. I'm very confused and will start looking online but has anyone else heard this?
I will also recieve Benadryl and a low dose of dexamethasone in my IV. No antinausea meds aside from the back up ones I already have on hand. Ugh. I feel nauseous just thinking about Friday.
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Numb- here's the end of an article I read about Glutamine...
"But here's the thing, such is the efficiency of the glutamine sourcing machinery of the cancer cells, that they will always have enough from the glutamine that is produced in the body. It is our healthy cells which become depleted and lose out. For example, with low glutamine comes low glutathione in our natural killer cells impeding their ability to defend our healthy cells and promote immune function which may be necessary in the cancer battle. With more than 90% of the body's glutamine supply in muscle, this will become heavily depleted creating a serious negative nitrogen balance. It seems likely that this depletion is tied to the common occurrence of cachexia and that supplementation of glutamine could confer great benefit. The clinical importance of cachexia is emphasised by the fact that it is the principal cause of death in about one third of cancer patients. While academic consensus still does not exist, a large body of evidence is now available to support glutamine supplementation in cancer patients; improving clinical outcome and quality of life, as well as reducing the risks of high dose chemotherapy and radiation."
So it seems like our bodies are the ones producing it and that the supplement helps still????
The info I read is way above my knowledge level. Hahahah. Too technical for me. I'll be asking my nutritionist about on Monday
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1UNIBOOB1 - I have done 2 weekly Taxols so far and have had no major side effects so far. I have not needed any anti nausea meds and no pain killers. Don't worry about Friday, the Taxol is much easier than the AC.
OAJ2013 - Hard to know what to believe at this stage. I would prefer to stay away from Glutamine after what I read.
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Had my 3rd Taxol today and all went well. Spoke to my Oncologist about Vitamin B6, B12 and Glutamine and she said that there is no conclusive evidence to say that it helps with Neuropathy. She said if you are taking a well balanced diet you don't need the extra Vitamins. When I told her about people recommending Glutamine she just said that sometimes women get a placebo effect and think that it is doing them good. I also mentioned Clarityn while on Neulasta shots and she said it was the same thing, no conclusive evidence that it helps but women can take it and think it is doing them good whereas even if they weren't taking it they would still feel the same.
My Oncologist does a lot of research and is on a lot of committees who do research so she said she would have seen reports on these things from time to time but none of them have been conclusive. I guess that is enough for for me.
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thanks for the input numb. I try to stay away from pills and just try to eat my colors. Of course I still ended up with cancer lol. But other than the cancer I was pretty healthy. Ok fine I was a little plump and liked my cookies and brownies and hated to exercise. Lol. But in any case thanks for asking your doctor. I am still waiting for my first taxol. Got sick after the last AC and almost ended up in the er.
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I had my third day on round 3 of Taxol yesterday and didn't get any crash .....yoo hoo !!! I guess this is because the steroids have been reduced and will be reduced even further until the 6th round and then zero. So hoping this means no more crashes.....the prayers are working !!
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Had my first taxol infusion today. I'm pretty tired right now but not overly fatigued. I slept most of the treatment but kept waking up to pee! So annoying! Interested to see what the week brings! So happy not to have to pump my body with a ton meds this week!
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hi everyone.
The first taxol infusion went well for me. My infusion appointment was at 11 and it takes me an hour to get there so I left work at 10...too early to eat lunch. During my infusion I had a brief bout of nausea and the nurse stopped the drip to let me eat some of the fruit I had brought. She thought the nausea was bc I had not eaten much that day not bc of the taxol. The nausea passed and I was able to sleep for a bit before hubby came to get me.
I am doing pretty well. Didn't take any meds afterwards. No nausea but do have aches and pains. And I am definitely fatigued. Thankfully it's the Fourth of July so I have an extra day to recover before work.
I am getting 12 taxol treatments, one every week. The nurse said the main side effect to watch out for is the neuropathy. I have a little of that but not much.
I did realize just yesterday that the AC gave me hand foot syndrome. It was there before the taxol. So I put an ice pack on my feet and will call the nurse tomorrow.
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So far so good on the Taxol. Going for round 5 tomorrow and have little or no side effects. I did have crashes on the 3rd day for the first 2 rounds, but nothing for the last two. Hoping this continues. No sign of neuropathy yet so fingers crossed I will be lucky. No sign of any hair growing back either, but think that eyebrows and eyelashes are getting scarce. Finding the Taxol so much easier than the AC, but I suppose it is early days yet.
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I just finished round 2 and cannot believe the amount of energy I have compared to AC! I feel alive again. I pray this energy stays as each week goes by!
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OAJ2013 - That's great, I find Taxol so much easier, like a walk in the park. Long may that last for us all.
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Dear oaj and numb,
I really feel like myself again. Except I have insomnia for a few days after the infusion. I told my husband I feel like I am done with chemo already!
I don't have much neuropathy so far, but I do have a lot of bone pain. It's just nothing compared to the AC
I have had two taxol after the 4 dose sense AC and I still have hair all over my head; it is not a full head of hair and I wear a wig to work to deflect competitive co workers' stares etc.
Hubby and mom told me they thought my head hair was actually growing. I am also having cramping and faint discharge. Wondering if I will get my period. It came once while on AC.
I kind of want my period again. I want to feel normal again. But I just bet it will be painful one.
Good luck to all of us.
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LAURAINGALLS - I had an infusion yesterday and was a little bit hyper when I went to bed last night so I took a mild sleeping tablet and this calmed me down. I don't like to take a sleeping tablet every night though but then I don't feel hyper every night either. I have not experienced neuropathy yet and have no pain, so I am lucky. I had about a quarter of an inch of hair on my head after AC but I wasn't sure if it was old hair or new hair as I had never shaved my head bald, but last week I shaved it bald so now I will know when the new hair starts to grow. I have a slight stubble on my head now, but it is extremely slow growing. My eyelashes are definitely get sparser and I have a baldy eye look. You will probably have to wait until you are finished the treatment to see if your period will come back. It probably will. I am long past menopause so not a problem for me.
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Hi everyone!
I'm new here, but I have read some of your posts in order to help my mother during chemo. We live in what is commonly known as a third world country, and maybe the tretmans differ here.
My mother has been diagnosed with IDC, stage II-a with nothing found on the lymph nodes. ER-/ PR-, HER2/neu 1+. She had right breast mastectomy on 1st of March, 2016. She had 4 rounds of (as I understand) AC (different drugs but the same class of drugs as your AC), and her fifth chemotherapy was Taxol only. Because she is overweight, she got double dose of taxol. That was on 7th of July, (two days ago) and she has enormous pain in her leg, joints, ovarians...I didn't mention she is 63 years old, and she has thrombosis for like 30 years now. It seems the Taxol has worsen her thrombosis.
We don't have much oncologists here, and we have many cancer patients, so every time she has to see the oncologist, he is in the hurry and doesn't have time to hear or answer any questions.
My question is: how long will this pain last? And what can she do to help herself? Painkillers don't work much.
Thank you all for sharing your experience here. It means a lot for people who don't have who to consult.
I wish you all to get better!
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VCT84 - Sorry to hear your mother is in pain with the Taxol. It seems like Taxol does cause a lot of pain for some women and does increase existing pain but I do not know how long this pain will last, maybe until the end of treatment. So your mother should really ask for a prescription for a pain killer from her Oncologist because taking pain killers is an individual thing and what suits one person may not suit another, so her Oncologist or GP should be the one advising her. I hope your mother gets the help she needs soon.
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I started Taxol July 5th and have been in pain since. I also experienced more nausea than I did with the AC.
Is this pain going to continue or increase with each treatment?
Kelly
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First, welcome, Kelly! We are really sorry to hear about the nausea that you are experiencing with Taxol. We know that many report this side effect. Have you spoken with your doctors about the nausea, and what they expect for you for your prescribed amount?
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I am taking 8mg of Zofran every 8 hours. It helps, but it just hits me randomly, like a wave. The pain is kind of everywhere and especially in my feet. I wonder if it will wear off by the time I have the next treatment.
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I apologize, maybe you were asking about the amount of Taxol? I'm not sure. Maybe they will decrease the dose if the tingling and pain in my feet doesn't go away.
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