Weekly Taxol group
Comments
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Thanks for the encouraging words ladies. For the most part I am happy going about my day, working, taking care of the fam and pushing past the SE and count my blessings on the good days, like today
! And I also am usually ok with what people say to me because I know they don't know what to say. I know I didn't before my BC, and I'm sure I'll still say something wrong to someone one day because they may be needing to hear something else at the moment. But sometimes I just can't take it especially when it's the same comment all day by different people! But I'm ok now!!As for work what I did from the beginning was use a sick, personal, or vacation day every week to lighten my load and I switched my night shifts to days. Thankfully my colleagues were ok with picking up more nights and my employer was ok with me taking sporadic time off. I also took additional sick days when needed. I'm going out on sick leave/disability for my surgery. My boss always knew there is a possibility of me going out on leave sooner if the chemo was too much. For now I'm going to get back up coverage for my nights and play it by ear as the time gets closer. If I have to got out on leave sooner I will. Just hoping I don't. I actually feel good AT work. It's just the before and after that's tough!
HomeMom, girl, no matter how different our journeys are on this path it is ALL hard!! Please don't feel bad about complaining. That's why we are all here. If someone thinks someone else's complaints are small potatoes they won't comment. I am always telling my self to get over it. Tomorrow will come.
Hugs to all!!
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Jules, I empathize! This is definitely not a fun or easy journey! It's just a whirlwind of doctor visits, treatments, appointments, and trying to balance a home life with side effects and trying to take care of yourself. It's nothing short of a pain in the ass and I applaud and marvel at those who have to continue this battle for the long haul. I bow down to them!
In the meantime, take it one day at a time. It's what I do. I just keep swimming. And I do this while caring for my two young children and my hubby works late hours. If you can, see if you can postpone the work return or see of you can lighten the work schedule and not work so many days. You need to care for you. Sending you big hugs!
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I'm going to be starting Neupogen this w/end because my white count has been so low. (Just had to skip two infusions, but I'm good to go for tomorrow.) Do I take claritin like I did with Neulasta? Any advice?
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I need to get back to doing some exercise. I was walking 3-4 miles almost every day and sometimes got on the elliptical. I bet that would make me feel better and add energy.
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megomendy, I continually have low WBC and have been on neupogen with weekly taxol. Just had #2. I didn't take Claritin before like with neulasta. However, I did have some muscle ache on day 1 but it went away. Hasn't been an issue but took a left over norco the evening of infusion on recommendation of the nurse. Nothing needed day 2 but we are all different.
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#11 Taxol is in the books. Strange how I feel better after the steroids. He did put me on augmentin, for my fingernails. I can see the light at the end of the tunnel. He gave me the option of skipping today, but I went ahead and took it.
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Yeah, steroids make me feel better too. I actually love them. LOL I just have to deal with insomnia on infusion days. LOL
Megomendy, yes, you can still take the Claritin. It should still help if it helped before.
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hi all, sinsin I don't know how you love steroids, made me all kinds of crazy. Glad I got off them at taxol # 2! I've just started 5 weeks of Ray and it's all good. I'm going to a brand new, very efficient service. I swipe in and pretty much go straight through for treatment, all done in 20 mins! But I am feeling the effects of 6 months of chemo....... My thigh muscles are like jelly and my feet still have some neuropathy but I think they are getting better very slowly. The light at the end of the tunnel is getting bigger by the day!
Hope everyone stays well
LIL
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Stinson- I posted the same thing on another board! I love the steroid energy. I got a weeks worth of activity accomplished in one day. Felt normal. Today I am struggling to keep it going.
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I also don't love the steroids, insomnia and weight gain, no thanks! But I'm glad it doesn't bother or affect some as much. I'm already overweight so the extra weight gain REALLY bothers me.
Although I am done with Taxol, I'm on AC now, backwards from most of you, I am here for any questions you might have. The nail problems were there and still bouncing back from neuropathy and the nail lifting. Stomach issues were mainly the first 8 treatments.
Anyway, I am recovering from yesterday's AC, today I go in for Neulasta, ugh. Have a great day, everyone!
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Yeah, I'm a weirdo loving the steroids, I know, but after such terrible immobilizing fatigue on the Epirubicin and Cytoxan, it's nice to be able to feel like old myself for a bit. For some reason though, I'm just now eating more than I use to. I have had 14 infusions and now I'm eating everything in sight. My hubby grilled up some filets (in hopes that I may actually eat) this past weekend and I ate all of my filet with mushrooms, the corn, 3 croissant rolls, and strawberries. Then not even 30 minutes later chased that down with two bowls of cereal. LOL Thanks to menopause I am gaining weight for the first time in my life and it's all in my stomach. I look 3 months pregnant. No lie! I was scared it was ascites because of how fast I gained it and how the weight is all in the front of my stomach, like I swallowed a basketball. So I got an ultrasound a couple of days ago and yep, I got fat. LOL Never been so happy to find out I'm getting fat in my life. So, time for me to start working out. Will be hard because currently I just walk as that can be hard enough to do some days. My legs get sore so easily how. I hate it. I use to hike and everything before this damn disease and now it's all I can do to walk to the mailbox some days. Fuck Cancer!!
Hope everyone is having a good Friday and has a side effect free weekend!!
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Going in today for Neulasta, hate the bone pain that I get. I hear you on the exercise, I am so looking forward to having stamina again and lose all the weight.
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Sinsin: I hear you on the weight gain. I've struggled my whole life - going up and down, but I've never been up this much!! I was walking most days until the neuropathy in my feet. Did a little work with weights on the yoga ball, per the PT instructions, but haven't had much energy this time around at all, especially now that I'm at work again. I feel like all my best hours are at work and by the time I get home I'm exhausted. What's weird, is I'm struggling with the big D, I'd think I'd lose weight since nothing stays in long. But I guess it doesn't work that way. Today it seems like the D is tamed, so hopefully I'll be able to eat something healthy this weekend. But back at it for treatment #11 on Tuesday. I figure I'm going to go for rads, then work on the 20 or so pounds to lose after that. Fuck Cancer.
Happy Friday!!
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Yes ladies, Fuck cancer indeed!!
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FUCK CANCER!!!! #11/12 done. Loving the steroid high too!!!!!! Hated steroids on AC, the crash after was unbearable I cried every time. Taxol steroids for me is just what's in the pre meds. It at least gives me 2 great days. I had my infusion this morning went in completely fatigued and miserable I slept from the moment my butt hit the chair. When I left I picked up the fam and we went to a water park! Lol!
My appetite flip flops. When it's in overdrive I say I'm working on my double D's because I'll be getting a DIEP flap for my reconstruction next spring.
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XRAYALLI does Claritin help your pain at all?
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Jules-Claritin takes the edge off for sure, my first round I didn't use it and it was pretty severe pain. Cancer sucks hashtag eat my dust!
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Can I jump on the bandwagon!
Taxol #2 was Tuesday. Must have been the steroids in the pre-meds. Did fine Tuesday, up most of the night . Worked until mid-afternoon Wednesday, took a nap, was able to take a nice walk. Same, Thursday and made it until noon today and have been crashing ever since. Left eye brow leaving me, taxol fuzz on head and I noticed my chin this evening. Getting that yucky taste in my mouth that makes me think everything will taste like cardboard tomorrow. fuck cancer! So tired of being tired, cranky, ornery and on edge with my family.i am no fun to be around, even when I try!
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Same for me too Alli just took the edge off and I didn't take it for AC #2 and realized how much that edge made a differene. They also told me I could take ibuprofen in the really bad days and that helped a little more!
MMT I also feel so guilt about how I snap at my 5 and 7yo and my husband all the time. I try so hard not to but I'm such a different person now. I miss my old me and can't wait to see her again!!
Hugs ladies!!!!!
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My MO told me to take Glutamine in juice/water three times a day for the first five days of treatment to counteract any Neuropathy Has anyone been using that? I get just about no bone pain at all - I take Claritin the day of my shot and then next day, but that is it.
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home mom, yes I used glutamine on about the same schedule as you, and I also took 100 mg of B6 every day. My chemo nurses told me to keep taking the glutamine for a few weeks PFC, but I ran out and didn't want to buy any more. So about 3 weeks PFC I ended up with a numb big toe. Now a year and a half later it's still not completely back to normal, but better. So - I would continue taking it for a few weeks after you finish chemo just to be sure.
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Meg, I took Neupogen for 7 days after my AC chemo. I did not take anything and did not have any muscle aches after. I do not think it causes as many side effects as Neulasta.
Laura
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good to know patin.... im not sure I would have thought to continue it PFC. Ive been taking it the whole time - religiously right before and after treatment, twice a day. I had been doing 3x but havent had any neuropathy at all. Dropped to twice quite some time ago. Started putting it in smoothies this week - getting tired of oj and it's yucky in plain water. Four more infusions for me. Im so done with this.
Jen
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Is that every day for several weeks (like how many weeks?)
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home mom, the chemo nurse suggested 3 weeks PFC. I was doing 4 days a week during chemo. It just so happened that I ran out of the glutamine powder exactly 4 days after my last infusion...
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Thanks PatinMN - I will definitely got that route, it couldn't hurt
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Hi everyone-
I've been off the boards for a couple of weeks.
MomMom- thanks for the information on the tee tree oil. Definitely going to look at CVS or elsewhere for it. Not sure if it is too late for me though since I'm already experiencing toe nail issues.
MD- Welcome! Sorry you have to go through this but hopefully you will find a supportive and encouraging environment on these boards.
SinSin- Good luck with your last treatment! Love the picture you posted a week or so ago. Beautiful!
I have Taxol #9 tomorrow. My fingernails are tender- (I keep them short and without polish) but so far no discoloration. Toes are a different story! Several are a brownish/reddish color starting at the bottoms of the nails. Started having tingling in my fingers (thumbs mostly) and numbness in my foot (when I wear socks/shoes it feels like there is a ball or bunching of the sock when there really isn't). Started mild with my right foot after treatment #7 and has gotten worse this past week after #8 (and started in my left foot).
I saw a covering MO at taxol #7 (when I also got Herceptin and Pertuzamab) and mentioned the numbness/tingling. She said it sounded like neuropathy was starting, asked me if I was comfortable continuing with the treatment (what???) and said she would inform my MO about the onset of neuropathy. She then went on to say they could lower my dose but that they were trying to cure me and the efficacy of the protocol was studied at the dosage I'm receiving and not at anything lower. So, I've been hesitant change anything and just keep plugging along hoping I can get through it and my neuropathy won't be permanent. However, since it seems to have worsened this past week, I'm going to try and talk to my MO or get a message to her (I only see her every 3rd week), otherwise I just have bloodwork and then infusions and have vitals done by the infusion nurse (they do ask a list of SE questions). There has been no discussion of taking any supplements like B6 or glutamine like others on here seem to be taking with success. I'm going to ask tomorrow. The covering MO I saw at #7 said if pain got bad in my fingers or I couldn't do things like button a shirt, etc they could prescribe a med to help (Lyrica maybe?). Anyway, it doesn't seem like what she was suggesting would prevent the neuropathy, just help with the pain I was already experiencing.
Has anyone had their dosage lowered? If so, is it 1.) lowered just for one or more of the remaining 12 cycles so the total dosage received for the protocol is less, or 2.) is it lowered so you are receiving less dosage in future cycles but total number of cycles is extended by x so you are still receiving the full protocol you would have in 12 cycles? Ugh..so confusing. Sorry.
Sorry for long post! SE's seem to be picking up now so I have more to report and more questions!
Hope everyone is enjoying the weekend!
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Cmp- I just had 11/12 last Friday and my neuropathy started around #8 also, in my right foot too. My fingers are very mild, I've been icing during infusions. Icing my hands are more affective than my feet. The ice just kind if settles around my ankles because I'm reclined so I figure that's why my feet are worse. For me it feels like my shoes are on too tight even when I'm not wearing any shoes. I only see my MO on herceptin infusion days also and they don't seem converned either because if is not affecting my daily activities. I've had an almost identical conversation with my MO about lowering the dose. They just want to cure me. Good luck. Keep us posted on any changes!!
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cmp, Have you been icing during your Taxol infusions? So far, I feel like that's what's prevented any signs of neuropathy. However, you can still experience neuropathy months post Taxol, so time will tell. I have heard about lowering the dose, but have no personal experience with that. I did have to skip my #9 Taxol due to low white blood counts, but the extra week off shot them back up to a good # & I was able to have #10 on Thursday with no problem. Hoping I can sail through the last two. Biggest SE is lagging energy, but still managing to exercise every day. Hang in there.Paula
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When I was going through Taxol treatments I was warned by my treating team more than once to report any adverse effects and especially neuropathy signs, immediately and they took it very seriously because neuropathy is often permanent. They told me up-front they would rather stop after infusion 10 or 11 than risk permanent neuropathy. I did have slight neuropathy signs that started sometime in the second half of treatment but never increased much till the end. I felt slight numbness in the fingers and later on, toes but no tingling or pain. I have to say that my dose was lowered from 80 to 70 after the first three treatments because of elevated liver enzymes on Taxol. I stayed at 70 till the end of treatment. The numbness in the fingers and toes is long gone now, however I continue struggling with a swollen foot that I was told is a rather typical taxol SE that may not go away.
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