Weekly Taxol group
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I was never instructed to take B6 or Glutamine, unfortunately. My finger nails are getting back to normal and all my toes seem okay except one big toe, it's atrocious. I am 3 weeks out from last chemo and feeling pretty yucky last couple of days, nausea, blech.
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I had another nail lift over the weekend and it looks like one more to go shortly. Is anyone using tea tree oil? That was recommended to me by a nurse. I also need to get better at using gloves when doing dishes or cleaning. I am just not good at remembering to do that. The glutamine is helping with the neuropathy, although, last night after my infusion my toes and feet were having quite the electric dance party going on. Hands are ok and I will know tomorrow on my tongue. It's usually a two day delay for it.
Good news! My birthday was Monday so I consider this a birthday present from my MO. He told me I didn't need to do the last cycle (3 treatments) of taxol so I have 2 more and I am DONE! Apparently, the first round of Taxotere I did is the equivalent to 1 cycle of weekly taxol. Since I did the 4rounds of cytoxan i am only short 1 round of adriamycin. However, since only 1 node was positive he felt confident that the 3 rounds of adriamycin was sufficient and additional chemo would not provide more benefit. So, I finish end of the month and start tamoxifen in September. Now I really can see the light at the end of the tunnel!
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Happy Birthday mmtagirl! That IS a great present!!! I too have heard that tea tree oil is good for your nails, it's worth a try.
My finger nails don't look like they've gotten darker with this last Taxol, and my toe nails look perfectly normal. I might just put my nail polish back on my toes.
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Hi Ladies,
I just found this forum and thought I would run by my se's. I am dealing with a numbing sensation on my head, around my mouth and forehead. Last Thursday, my MO suggested I go straight to the ER to rule out anything neurologically. Had a EKG, bloodwork, CT Scan and MRI with and without contrast of my brain. Everything was thank God normal. My gut feeling tells me this is a steroid reaction. It is more of an annoyance than anything else. Also during the course of treatment, I had a non-itchy rash on my legs which went away with cream prescribed by a Dermatologist. Currently, I have a slight rash on my arm which seems to be going away and an itchy rash along my right hand knuckles. I'm using Hydrocortisone which does help.
I am on a 12 week taxol/herceptin infusion. Just finished treatment #10. Just 2 more treatments and I'll be finished with taxol and the pre-meds!
Has anyone had any of these se's??
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Congrats MMTA girl!! Happy birthday too!! Now it's time to feel way way better!!
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Hi Mary, I'm from NJ too! I haven't had any neuropathy at all - some girls here have, including that of the face and tongue. I didn't have any rashes either, but my sister did during taxol... all normal side effects, I guess.
Happy Birthday, MMTA!
I'm 9 days post final treatment... feeling pretty good. Not much stamina. Had my last fill yesterday, have my rads sim tomorrow. Oopherectomy scheduled for 9/2. moving right along....
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Hi Mary, I just finished week 10/12 with taxol. I did get a rash the week that I went steroid free. Lacy, not itchy. all over trunk, arms, legs. I took Benadryl and it went away. Now I'm back to a small dose of steroid night before, morning of, but not infused. It seems to be doing the trick. I also had numbing in my bottom lip here and there. The onc just asked me to clarify if it was lower lip or both. In my case just lower. I assume it's okay. It's only happened a day or so each cycle.
Hope all goes well for you!
Linda
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I am posting this on a couple of boards because I think it is interesting and may help someone.
http://blog.dana-farber.org/insight/2014/08/post-traumatic-stress-and-cancer/
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Jen, I'm from North Jersey! I thought I was doing good with no neuropathy until this facial numbness!
How wonderful that you are finished and it sounds like it went pretty easy for you! Two more for me - can't wait until it's over!Linzer, we are at the same point 10/12! 3 weeks ago my MO lowered the steroid from 10 mgs to 8 mgs. This past Monday, she lowered me from 8 mgs to 6 mgs. I called her today and asked if she can lower me this coming Monday to 4 mgs. The nurse who does the infusion said I probably don't even need the pre-meds at this point, but they still do them. Who knows. I have this numbing on my upper and lower lip and even when I raise my eyebrows, I can feel the numbing above my eyebrows. It's more of an annoyance than anything else. Hopefully, this all goes away soon. It has to be from one of these meds or both (taxol or steroid). My sister in law's friend, who is a 5 year survival, said she remembered having numbness on her face too. I guess it's just one of the se's that I have to deal with until I get to the finish line.
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10\12 for me too! All went well.
Thank you for the link brigadoon!!! I think I have been avoiding processing the emotional part of this, just getting through it for now. I have 6 journals completely blank that people have given me during this and I should really focus on more than just the physical stuff. I cry occasionally but I don't really frame what this has all meant. The article just reinforces that it is important to do the mental/emotional work also. Thanks!
Hope every has a great day, and minimal or resolving SEs!
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Xrayalli - My word, Taxol hasn't made me feel nausea at all. It's been three weeks? Yuck, hope it passes soon.
I think through all this I've been in a little bit of denial. I know it's happening, and sometimes I get the boohoos when I'm alone, but it's like I'm confident it's going to all be ok or something.
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Mmtagirl, that is awesome news and happy birthday indeed!!
Mary1234, it could be neuropathy of the face. I got that. It was more of a tingling and numbing sensation all at once and I STILL have some facial neuropathy around my mouth and I'm 4 weeks post chemo. It's not as common as neuropathy of the hands and feet but it's real. I speak with experience LOL.
Brigadoon, thanks for sharing! My family all think I have that! In fact, my hubby calls me a hypochrondriac because he thinks that I think everything is cancer. And well, if the damn shoe fits! (I pray it doesn't! I have had my share and I'm done, thank you!)
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Sinsin,
That is just what I told my husband tonight. This has to be neuropathy of the face. At least I feel it will go away gradually - ugh.
Thank you for sharing your experience.
Blessings
Mary
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Steriod insomnia strikes again!!!!
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thanks for all the birthday wishes!
Mary, it does sound like neuropathy on the face. I have that periodically. The MO calls it peri-oral neuropathy. Mine is mostly on the tongue and cheeks but sometimes my lips felt weird, too. The glutamine is helping.
Ann
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I have had bouts of facial numbness.
. It felt like I just had dental work done. Number 10 finished this past Tuesday. Today will be my rotten day but I am planning on making the best out of it. I have too much to do. Lol.
Clarrn- I normally have the insomnia but this week I took one lunesta, one Ativan and one jamaician rum cream drink and slept. Lol. I was done not sleeping on Tuesday nights.
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My nurse practitioner cut off my ativan yesterday... called it habit forming, even though I have taken less than 25 since diagnosed in DECEMBER....gggrrrr! And gave me lecture on chemo weight gain, went on and on about these pesky pounds increasing recurrence rates and decreasing survival. I have only gained 10 POUNDS! I bit my tongue as this poor woman is easily 300 pounds. And honestly, I don't know what else I can do. I am walking as much as I can. And yes I did enjoy my birthday and anniversary this week with a steak and a cupcake but SERIOUSLY???? With 3 doses of chemo left I wanted to tell her where to shove her advice. Anyway, my dear MO came in after that and I never want to see that other lady again! As if we all don't have issues with how we look right now, boobs cut off, bald, and puffy!
Anyway, had to get that off my chest!! Whew!
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clarrn - 10 LBS! How tall are you? I am 5 ft and my weight fluctuate 5 lbs within a week depending on how much salt I take in. If you are taller than that I would think that is as much as, oh, a breath per inch and you are still in treatment. She is on crack - or following a script.
Yep, not seeing her again.
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Clarnn, You had that rap from her once before, didn't you? Wow. That is outrageous. Don't in any way put yourself down as a result of that message. She is projecting her own need to lose weight onto you!
Activity makes me feel better but I have not felt up to my usual walks for the past week, and so am trusting my body on that one. You can trust your body to tell you what it needs and to give you the energy to do it, little by little.
I have a question about low grade fever and malaise with Taxol. I had a little of that back in April, but never get that now. Has anyone been dealing with this after being on the Taxol 3or4 months? Advil helps the symptoms, but not the extreme fatigue. I had a 20 mg dose of steroid in my chemo yesterday, 8mg more than usual due to a system change, but slept like a rock last night and could probably sleep all day today. Less of a temp, so that is good. I had a urine and blood tests Tues, so results of those should help rule out uti or the like. Thanks folks.
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Pfft! I weighed 120 all my life then 130 after my daughter's birth. I now weigh almost 140 and it's all in my damn middle! Thank you menopause! I swear, if a nurse said something like that to me, I'd tell them where to shove it. LOL
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I've gained at least 12 lbs - I'm onlhy 5'3, I only have two pairs of shorts that fit and that's because I just bought them. My MO - and any other doc I mention it to - has assured me that once active treatment is over the weight will come off. How DARE she cut off your ativan... that's ridiculous. All my docs have also assured me that once this is all over the need for the ativan will likely fade away. Now - maybe they are all blowing smoke for me for now, but that's OKAY. It's what I need to hear and what I need to do to get me through treatment. Take away my ativan....crazy.
Jen
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I lost 10 lbs when I found out I had bc, I'm one of those that lose their appetite when stressed, then gained it all back. I was always thin, but over the last two years gained almost 20lbs, so after this is over I will loose that weight! It is just healthier no matter what the situation.
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Clarrn: Wow - so insensitive of that np!! I have gained at least 20 pounds (5'8") since January diagnosis due to lack of exercise and not being able to eat what I used to eat. I will focus on it after radiation. No, I don't feel great about it, but I don't need some idiot telling me I need to lose weight. None of us do. It reminds me of a time when a nurse told me my one month old baby had gained too much weight and all he was doing was nursing. I never went back there either. As if we are not dealing with enough. Sorry you had to listen to that!!
Mameme: Hope you're feeling better soon and find some remedies to your SE's!!
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Yes, she gave me the save lecture a month ago. Guess I should have been going to the gym while I was in the hospital with sepsis too...lol. thanks all for the support again! I am 5'2.
Mame - I don't know but I don't think that the low grade fever part is normal but I could be wrong! Extreme fatigue is part of the possible effects though.
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clarrn - I use to be 5'2" then I gained10 lbs and it weighed me down so much I lost 2". Well they told me to lose something (Just being wicked. I did use to be 5'2"and I have gained much more than 10 lbs. and one shrinks with age. )
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Mary1234- I'm also in Northern NJ! I also have neuropathy- in my hands and feet. Can't stand it and now that I've finished chemo (on 8/4) my MO is ok if I want to try B vitamins which are supposed to aid in healthy nerves. Others have taken L-Glutamine and B6 during treatment but I didn't. Going to start taking B6 to see it if will help at all. Good luck with your last couple of treatments!
Clarrn- I can't even believe what the NP said to you. That is beyond crazy!
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Clarn- wow, how did you not slap that woman? I have gained 10 pounds through my chemo, friggin sucks!
HomeMom-I had Taxol first and ended with AC, so that's why the nausea still. My MO does AC last, for a number of reasons.
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Xrayalli - Ahhh ok. Every MO is different. I don't think mine even does weekly Taxol, just bi weekly and every three weeks.
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I think we are all reaching a saturation point with the stupidity!!!!! Hang in there my lovelies.
Was in the chair today and in the waiting room ran into my husbands aunt who was dx'd with mets last year, four years after first dx . Put my infusion in perspective. We control nothing, we all just do the best we can.
Be well, I think of you all.
I have 2 taxol left (ending 9/2) and the herceptin/perjeta for a year - already dreading the fear once those 2 end.
Sandra
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Cmp106, It really is a small world! I'm in Bergen County. What county are you in? I go to (MSK) Sloan Kettering in NY. Where do you go? I've been taking B6 since starting treatment. I haven't really had much neuropathy in my hands and feet, but my face is getting the numbing effects. My MO also set me up to see a neurologist at MSK in mid September. I hope it's gone by then!!!
Mary
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