Weekly Taxol group
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DKK - so sorry for you! Everyone is different, but it took me 8 weeks out to start feeling better from Taxol. I think radiation made recovery time slower. I’ve cried more after chemo than I ever did during. I thought I’d bounce right back and the doctors really minimize, IMO, how long we can feel like sh$t and the damage Chemotherapy does to our bodies. Some women get lucky and feel pretty good fast, but not all.
I hope you feel well sooner than later!
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DKK, I'm so sorry! I know how you feel, that you want to finally just escape and forget about cancer and chemo for awhile. I live in Ohio, too, and I'm just so sick of rain. We got some reprieve today and for the next 3 days, so I hope you can get out and enjoy some sunshine for a change.
I've had to cancel 3 vacations since DX. It really stinks. The only good thing is that the airlines and hotels have been very understanding and have given me refunds or allowed me to rebook without charge. It's been almost a year now since we've been away and I am hoping that my skin biopsy comes back clean so that I can start looking beyond cancer soon.
I'm finally finished with chemo but in 3 days I have my BMX and reconstruction, so I'm steeling up for being down and out again. I'm 10 days out from chemo (Taxol) and I'm glad that my nose isn't constantly running and that the sores inside my nostrils are starting to heal. My eyes are still really dry and sticky, though. I hope that they recover because I feel tired when my eyes are tired. My bloody/lifting nails are also growing out, sloooowly but surely. Still suffering from nightly pins and needles in my feet.
The good news is that my husband, my youngest daughter, and I traveled out of town to visit my other daughter and her husband. Spent a nice weekend with them. It's her bday today and I wanted to make her feel special. She's had a rough few months dealing with both her mom and her MIL's cancer.
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Thank you once again for your kind words of understanding. Like someone else posted, nobody else understands what we go through. You all have been such an awesome support group. I just needed a reality check I guess
Mucki1991 & VL22 It is crazy how people (ha! Including me ) think that when your chemo is over you should get right back to normal. It is a harsh reality that we will never be the same person we were when we started this journey and it takes time. But I still want to kick cancer's a##ss and try my hardest to not let it get the best of me. LOL
Lisa I will take advantage of the upcoming sunny days maybe take a drive to see my brother in Toledo. And looking at the positive notes you've right no dry bloody nose, hair is about a 1/2 long, dark hair is popping in amongst the white! Eyelashes and eyebrows are sprouting. I even feel some bristles on my legs. Wo wo
So nice you got to visit your daughter I am sure she loved that special time with you. Prayers for a successful BMX and reconstruction.
Have a good week ladies!
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Good morning...
DKK...Thinking of you as I look out my window seeing a beautiful, sunny day! I live in Ohio, too. So, I can relate to all the rain and flooding. Enjoy each day as much as you can. It does take time. After my first bout of breast cancer, it took several months for me to feel somewhat back to normal. So, hang in there!!
Lisa...What a nice weekend for you! Will be keeping you in my thoughts for your upcoming surgery.
Yesterday was a very achy day for me after Taxol #11 last Thursday. I expect today will be, as well. Then, I usually bounce back by Tuesday....only to get ready for Taxol #12 on Thursday.
Have a great week, ladies!
Hope
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I had my 2nd to last taxol which Thursday. My last chemo day will be March 8th. It is getting harder and harder to bounce back from.
I find myself just so weak. I am here at work today thank goodness I don't have to move around much. The neuropathy has gotten pretty bad in my feet. So, my Dr cut the taxol down by 20%. I just called my DR as there is something that they can give you for the numbness help it not be so bad, from what my chemo nurse was saying. So waiting for DR to call me back. I hope so but I guess if I have to live with the madding tingles and be cancer free I will take it. But, I will have to say it drives you nuts or it does me at night anyway. Hard to sleep. Hoping DR has something that gives something for relief. Does anyone else take anything for relief of neuropathy?
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ventureval....I've had 11 infusions of Taxol. I have a bit of neuropathy in my feet. My oncologist said to take B-12 for chemo related neuropathy. I have always taken B-12 as a daily supplement - even before chemo. Perhaps, that is why my neuropathy hasn't progressed quickly. I have doubled my usual daily dose, hoping to keep it at bay.
Hope
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ventureval You can take gabapentin for neuropathy it worked pretty well for me.
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Thank you for your help
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Last night (12 day from last chemo) was the first night in a long time where my feet didn't start aching when I laid down. I'm hoping that means that I'm over the worst of the neuropathy. Still feeling quite a bit of numbness in my hands, but I attribute that to the nails lifting. I figure I'm a month or two out before the discolored nails grow out.
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Ventureval- I saw a different MO at my last treatment because my regular MO was doing hospital rounds, and when I told her of my neuropathy symptoms (pins & needles in both feet that seems pretty constant), she gave me a sheet about glutamine supplements. As with anything, I'd talk to your MO about it before you take it, but it supposedly treats tingling, mouth sores, muscle aches AND diarrhea! Wow! To be honest, I haven't yet tried it because I couldn't find it at my local drug store (it is most likely at a nutritional supplement store) and I didn't have enough motivation to go to another store. I'm going to get some for my next treatment to see how it works as the pins and needles are bugging me more than before. My last treatment is March 9th, so I'm going to be right there with you cheering as the last dose goes down!
LisaRX- I'm glad to hear that you had a nice trip prior to your BMX! I'm surprised that they have you going in so soon as my MO said they wanted me to wait 5-6 weeks after chemo before surgery. I too am going to have a BMX and I'm hoping that you have a speedy recovery! Lots of ladies have said to be sure to ask for anti-nausea meds before surgery as that is not something that is necessarily given without you requesting it and if you are prone to being sick after surgery it can make a huge difference!
I know that I am looking forward to being at a point where I don't have to reset the clock to zero for every treatment and get better in order to just start over again! I also appreciate the fact that every day is a little bit lighter a little bit longer than the day before, and that I get to look forward to more sun and flowers to celebrate the end of my treatment!
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hello Sisters on Taxol!
I have a strange SE and wanted to see if I was the only one....
I have high fevers throughout day and night.
102-103. And I have been hospitalized and tested head to toe and they can find nothing wrong.
Once the fever goes down I actually can go to work. So I’m not sick. It’s just the craziest thing. Anybody else out there heard of it or experience to? I opted out of last 2 and I only got 2. Infectious doc said continuing could be dangerous but Oncologist disagrees. It has been 2 weeks since last chemo and still fevers. Ugggg
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Gwin...I had my 12th Taxol infusion yesterday. I've never had a fever at any time during my treatment. That would be worrisome. I hope they can figure out what's causing the fever.
Hope
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Gwin, for Taxol 1 thru 3, I suffered from chills and high fevers that would last just a short time. My numbers continued to be good so they kept doing infusions, though they reduced it by 25% after the first 3 due to neuropathy. @fter they reduced it, the fever and chills went away
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I'm also happy to report that 16 days past my last Taxol and all the SEs seem to be gone or on the mend. My fingernails will take a while to grow out, of course, but the numbness in my hands is gone. Also, I haven't had the numbness in my feet for several nights now.
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Hi ~ I ended up having 5 of the 12 weekly doses of Taxol and they kicked me off in early November. I had high temps up to 102, went to the ER, breathing pains unlike I've ever had, and extremely low blood pressure. Docs just thought I had the flu, but absolutely nothing tested came up positive, including bronchoscopy fluid... all negative for bacteria or virus. There does happen to be a 'rare' side effect that causes inflammation of the bronchial tubes. Had a before and after (steroids) scan and the steroids did the trick. This was to be my finishing chemotherapy, so immediately got the lumpectomy scheduled and done. Looked like all the triple negative cancer cells got nailed quite well, which is good, and clean margins. They did, just as a matter of interest because they now know how SPECIAL I am (LOL), find in the pathologies done on the lump tissue, yet another type of undetected cancer cell that was HER2+ ... so now on Herceptin. Feel very blessed they caught this and there is a targeted immunotherapy for it. Hope this helps! I do wish the docs had gotten into action sooner, it seemed to take them at least two weeks to believe me that I was having difficulty with pain when breathing, and could not sneeze or cough with any gusto at all, very painful almost like trying to breathe through a brick wall. Cannot tell you how many times I thought I was going to black out from the low blood pressure. All has resolved now as far as any pain and low blood pressure, but still have my follow up with the pulmonologist (sp?) to review my last CT scan. Hopefully there isn't any permanent damage. They do now attribute it to the rare Taxol reaction.
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Also wanted to comment or ask about the neuropathy ~ I wish I had been told, or had known about icing fingers & toes, because I've got the tingling & numbness in them all - sometimes pretty distracting. I do work with my hands a lot, and not real excited about it still feeling this way 4 months post Taxol. Have been taking the L-Glutamine for a couple of months, but it doesn't seem to be doing a lot, unless it is and it would be worse without it. Also came across some information that many people attempt to raise nitric oxide levels by taking a supplement containing the amino acid l-arginine??? I started to get acupuncture for it, but had trouble keeping up with the 8 weeks of recommended weekly sessions, along with all the other doctor appointments and trying to schedule a mastectomy. 'whew' May attempt the acupuncture at a later date when my surgeries are done and am recovered from that. Sending blessings & good vibes and wishes to all of us going through this. (((hugs))) Barbara
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Hi Ladies, I just had #1 out of 12 weekly Taxol and Herceptin. So far so good except for just being a little more tired. My question is how many of you lost your hair or lost enough of it that you decided to shave it and when did you start losing it.
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Welcome Haven77 - I got a buzz cut about week 4 and shaved it off by week 6. Drink lots of water. Hope you continue to feel well.
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I got a buzz cut after the 2nd of 4 A/C treatments. My hair was already falling out by then.
I finished my 12 rounds of Taxol last Friday, and my neuropathy seems to be getting worse. I now how have persistent knee and hip joint pain. I just experienced a "shooting" pain in one leg. That's new. I noticed that my limbs started getting more tingly as I was in the middle of yoga, which I just resumed after an almost 6-week hiatus. Has anyone ever experienced increased neuropathy with exercise?
I hope it goes away. May have to go back to acupuncture. I'm not as tired as I was five weeks ago, however. I thought I read somewhere that it takes a while for neuropathy to resolve itself even after the treatment has ended. I go back to work next Monday. Getting my radiation mapping done on Thursday, and first radiation treatment is next Thursday.
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I finished taxol on 12/06/17, neuropathy presented itself way worse post-taxol than late infusions-I had twelve Taxol.
I’m still working through it, but feel at least 60 percent better at this juncture. I don’t see any clear reasearch or consensus, on combatting Chemo induced neuropathy. But if I had to play a hand... I would definitely put acupuncture in there! And your exercise of choice. Mine happens to be Yoga for years.
I threw b vitamins in there. And basically went gluten free.
Love to hear anyone’s experiences or thoughts??
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My neuropathy recently began with Taxol #11...I had #12 last week. There was no difference in the neuropathy. It mostly bothers me at night while I'm sitting and watching TV . I asked my NP about it and she said it usually is more noticeable when we are idle. She recommended B12 which is the best B vitamin for "chemo-induced" neuropathy...and to "keep moving". I still have 6 more rounds to go. Hopefully, it won't get any worse.
Hope
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Hope and anyone else experiencing neuropathy - google “l glutamine for chemo induced neuropathy" and you'll see a bunch of links to articles suggesting that l glutamine has a beneficial effect on neuropathy for many patients. Worth a try if your MO approves. I used it successfully. (That’s an L in front of glutamine.).
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The advice I received from my oncologist is that treatment for everything take a while, in my case about 9 months. So, I need to realize that the recovery period my take just as long. Also, with the neuropathy, when your nerves are repairing, you may experience the same tingling and shooting pains that you do with the neuropathy. Or as my MO said a burning feeling. I think everyone will have diffferent experiences but just remember to drink lots of water, take b12, and l-glutamine and a bit of patience. (The last bit is really hard for
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Thanks for the neuropathy tips. Yes...the burning sensation drives me nuts.
Hope
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Hi, this is my first time posting in this group but I've been reading it from time to time. I appreciate everyone's experiences.
My 10th taxol just got cancelled because of an increase in my neuropathy. For me, neuropathy started just a bit after my second taxol in one foot and a few fingers, and stayed that way until after my 9th. Then (coincidently?) after a strenuous workout with a physical therapist I had a sudden surge in symptoms--numbness throughout my legs and even on my face (nose, chin, lips). I'll go back to the chemo clinic next week and we'll see if we resume, perhaps at a lower dose. I hope so.
I've been icing since my second taxol and take 15 grams of L-Glutamine 2x/day, twice a week (on chemo day and midweek). I'm active: running and strength training at the gym, walking 10,000 steps daily, etc. And using the MyFitnessPlan app to make sure I get enough calories and nutrients daily, focusing on veggies, non-dairy, no sweets, rarely wine, etc. In other words I am dong everything I can think of. My sister got this very same form of cancer 12 years ago and is now on the final stages of hospice. Watching her dying of the metastasis scares me silly.
The plan has been 12 taxols, the 4 DD ACs, then a mastectomy, then proton radiation.
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Patartist, I'm so sorry about your sister. There's nothing more sad than to watch a loved one die.
Re Taxol: If it's any consolation, after my 3rd Taxol infusion, which gnarled my fingernails and gave me fever and chills for days, they reduced it by 25%. I was able to tolerate it much better after that. It's quite a victory to get through #9 at full strength. Many women cannot make it through, and you've already completed 2/3, so congratulations. I believe most physicians would be very happy with that and would be okay reducing it or even skipping the last 4.
My advice is to give yourself a break. You've clearly made wonderful strides to make your body as healthy as possible. Now perhaps you can try to learn some coping techniques for letting go or controlling the fear that you are feeling. Yoga, meditation...maybe even see a counselor. At some point we all need to just trust the doctors and trust God to help heal our hearts and bodies.
Wishing you the best.
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Thanks LisaRxCincinnati for the encouraging words. I’ve been meaning to get to a yoga class so you’ve inspired me
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Patarist - I'm sorry for your loss. Getting a cancer diagnosis is scary and hard under the best of circumstances. My best friend entered hospice the week my diagnosis was confirmed and died the week I started chemo. But she lived years longer than expected and lived her life to the fullest and she is my heroine and role model. Sounds like you are already keeping active and paying attention to diet and exercise. I sure couldn't have walked 10,000 steps a day at the end of 8 taxol treatments. Keep checking in.
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Hello everyone just got back from church my prayers are with all of you sending some positive vibes and a warm caribbean hug to you all.
So far I have had 4 rounds of Taxol and the overall feeling is that its way more tolerable than the AC. I have had some fatigue, headaches, loose stools, dry skin but nothing I can't handle.
I know that the SEs are cumulative but I am praying that I don't get any neuropathy.
Stay strong, rest when u can eat healthy lets kick this Cancer to the Curb.
Dark13.
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Patartist, I'm so sorry about your sister. I wish you peace.
I experienced the same coincidence as you. The neuropathy was pretty stable -- minor pins and needles for most of it, but which got worse after the 9th infusion of Taxol. I finished the 12th and final infusion two weeks ago. My doctor wanted to cut me off because of the neuropathy, but I said no. The symptoms worsened last week after a pretty rigorous yoga session for an hour 15 minutes. I thought I was taking it easy, but I could feel the pins and needles radiate throughout, and I got a sustained hip issue the day after that got worse as well. The next morning I got a shooting pain down one leg. I got another session of acupuncture and started taking L-glutamine. I got a massage yesterday. I think the heat and manipulation made it better. I went back to yoga today, and my hip is not bothering me. It helps to roll it out with my roller.
So my doctor says it might get worse before it gets better. My GP gave a me a prescription for neurontin for the nerve pain. I have yet to take it. Trying to limit the toxic stuff my liver has had to bear for the past six months. I hope you find a remedy that works. I was also icing hands and feet while being infused and after. Whatever works. I believe staying active is key, but don't push too hard. As my oncologist told me, I'm not training for a marathon. I hope your neuropathy symptoms start waning immediately.
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