Weekly Taxol group
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salasila, today was my 7th Taxol and it went as usual, I also got a shot of Herceptin, we get it subcutaneously in Europe, it is rather painful in the beginning but then gets better when the nurse gets through with the half of the shot. I have some kind of sensation in my hands nut there is no numbness, it is like aching, like joint pain. I will soon have no hair and my eyebrows start falling, I do not know how long it will take for them to grow after that.
What you described is a baseline for 1-2 stagers. They do not do any PET-scans said my BS when we had a meeting regarding my pathological report. I told her I was having pain between my shoulders and was very worried and she kept telling me that it was muscular, she even found my muscle ties and pressed them so I wrenched in pain and she said, this is what is causing your pain. I got prescribed anti-inflammatory and since I was so concerned she recommended my GP to order an x-ray, which came back clean. Anti-inflammatory did not help much and since then I went to two different PT, one of them has worked so tied on my ties that I asked her to stop for a while. I am doing exercises, using cold and warm pads, but still have this spot there that hurts and I am very tired of this.
My first oncologist was sort of a realist and very laid back he told me that there was no need to order any PET-scan because if there is anything smaller than 2 mm it will not show. I asked him then what, you do not do anything until there is something symptomatic and he said yes. Since they remove small tumors before the treatment there is no way to see whether the drugs worked, literally no way to know. I asked whether they can test it the drugs on the excised tumor but the second oncologist I met told me that there were many attempts to test it on the tumors but there is no reliable method what so far because tumors apparently do not behave in the same way once removed. When they do neoadjuvant treatment they can check whether the tumor responded to the treatment, something they call pCR, it is a good to achieve it for those who are doing chemo before the surgery but it does not predict recurrence. It is just wait and see and it freaks people out. I started a mild anti-depressive. Never in my life I thought I would need any and I was depressed before, but all this is causing anxiety, so times like these call for extreme measures. Some rely on statistics, but the truth is that statistics do not apply for one individual. I keep asking the nurses and the doctors whether they have seen someone with similar stats ..etc and they say that they have seen everything, recurrences for early stagers, but they have also seen a lot of, more people of getting better and never coming back, that it is very individual and I want guarantees and there is no for this disease. Some bc is slowly growing and can come back later, the aggressive forms are coming back within the first five years, but some can come back after five years. I am too reading some threads, or staying on TP thread because there are survivors of many years who come back and say hello, gives a lot of hope. Sometimes, still very often, I have break-downs and ventilate. This is very hard to stay positive or to come to terms with it. I wish there were more reassurance and out there people are living their lives like nothing happens and I was one of those people before. Five months before my diagnosis I had a mammogram and the US, they told me everything was find, it was in January, in May I felt a lump.
My contact nurse said the same thing about these boards, that people who moved past their bc they are not here, the moved forward.
Cherry
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I'm on my 5th week of Taxol and Carboplatin (finished my 4 rounds of AC). I take Advil PM to help me sleep the night after an infusion. Med Onc said it was fine and it helps me get and stay asleep. Hope this helps!
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Travel -I take 30gram per days only 3 days afte taxol. I even double check my paperwork.
Cherry - hugs!! There is no guarantee in cancer, I’m learning to accept it and put my life on God’s hand. Since we can’t control it, we can’t do anything, I just hope I can get through the chemo then move on to radiation. I don’t know what I would do if cancer comes back, but I know I will enjoy my life and do something for the time I have.
Warrior - I will try Advil PM next round, thank you!!
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I see light at the end of the tunnel! # 9 in the books!
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Susie, I just asked my MO nurse about the flu shot during my herceptin infusion today and she said that yes, the MOs in that center want all of their patients to receive a flu shot whether they are actively in chemo or not. I went ahead and got mine today.
Paulette, an Ativan pill helped me sleep on the first two nights after chemo. It is prescribed for nausea but also knocks you out!
Sala, I am stage 1A and when I asked about scans my MO said that they don't do scans on stage 1 if there is no evidence of other symptoms.
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Sue - I took my Ativan but it didn’t help me maybe the steroid over power my Ativan. I will ask my MO about flu shot this Thursday but I’m doing weekly taxol I wonder would taxol kills all the cells that included the flu shot also
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Is anyone else having issues with their skin while going through Taxol? My skin just generally feels tough, especially my feet. I put a good strong Gold Bond lotion on my feet every day, and it’s still peeling off in chunks! One morning I found a chunk of dried skin in my bed! Ewww. I know, it’s a little gross but I wondered if anyone else has noticed the same.
By the same token, my facial skin looks really good. It’s very smooth and clear, isn’t that odd? I still haven’t noticed any issues with my nails, but then again I haven’t changed my dark polish for about a week.
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Ms Robin - my feet are doing fine, nose and finger tips are dry, but that is kinda weird! You need more richer lotion??
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Msrobin I'm the same as Paulette. No chunks falling off. Do have nice smooth facial skin like u and dry fingers like Paulette
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I’ve used Gold Bond foot lotion for years because it’s amazing and inexpensive. On the rare occasions that I pay for a pedicure, they always compliment me on my soft feet! I think the same forces that make our facial skin soft is trying to work on my feet. I picture the chemo knocking out the older skin cells, revealing fresh new skin underneath. I think I’ll start soaking them in Epsom salts, and maybe lotion a couple times a day. It’s so odd, I always have nice feet. LOL I looked down during my chair yoga to see my feet peeling and I was embarrassed!
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I finished week 4 of taxol today. At one point I couldn't catch my breath. I think it had something to do with them giving me less steroids today? They gave me Benadryl and maybe more steroids and that seemed to resolve it, but this is all from my fuzzy memory because I ended up pretty groggy and drugged up. I remember the MO came n and reassured me they would resolve it fast, which they did.
I'm cold capping, so haven't really lost any hair yet, but I'm wondering if most people lost much hair by 4 weeks. I'd like to have something to compare my cold capped head to if you don't mind sharing. Every time I comb my hair, I get nervous that it will fall out.
I have tingling in two toes and a constant bubble head cold feeling which the nurse said could be chemo brain. Otherwise I'm doing ok with SEs so far.
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msrobin, I'm in the same boat .... I've been using Bag Balm (green tin) on my feet at night and it helps. I had really badly cracked heels at one point and they're good now. I just found a really rough/peeling spot on the ball of my foot so I've started using the balm there too. (And my face is clear.... I had horrible cystic acne before diagnosis...can't decide if taking out the IUD or chemo helped.
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Hi Brightness, my mom had gone through her 3 round round of Taxol and her hair has started falling out in chunks. Over here, there is no cold cap technology, maybe that's why the hair is falling out faster.
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Brightness - my blood pressure is high today now I worried about reaction from tomorrow infusion also.
Hair, I got no hair for long time, AC #2 took most of my hair.
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Pei, thank you for the update in your mother. I hope she is able to have a wig or hat to cover her head when in public.
Paulette, maybe you can tell them what happened with me and ask that they slow down the infusion if necessary. I think my blood pressure was fine though, but I'll admit it was scary. According to my Fitbit, I slept for over an hour after it happened, yet my friends were still changing my cold caps, so maybe my breathing just slowed way down and I barely moved which would make the Fitbit think I was sleeping? I've got some blanks to fill in so I understand what happened to me. I'm sorry about your hair. I've read that those who do AC first often start getting regrowth during taxol.
I appreciate the input I receive here
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PauletteK, Wonderwoman386, susie_2017, hhuey - thank you for all your comments on Benadryl. I clearly should've logged in to the site and take notice! I didn't do it before my second treatment and it's on me - I had another somewhat crappy experience with my second treatment yesterday.
Because of the reaction my first time, they upped my pre-meds including Benadryl! They gave me 50mg (which is, amazingly, only equivalent to two pills by mouth, but it's A LOT for me). I was so dizzy that I told them I already felt so crappy, I wouldn't even know if I had another reaction! My nurse again hung out with me, and chatted to me. About 9 minutes in I started feeling tightness in my throat. Honestly, don't think it was the reaction, but I was just so nervous from feeling completely out of control and dizzy. I was talking to my nurse and couldn't even look her in the eye because my eyes were so unfocused - I'm usually great at eye contact when talking to people and I actually listen to what people say, lol.
She stopped taxol at my first hint of throat tightness and I begged her NOT to give me anymore Benadryl. She gave me more pepcid and we restarted at half speed. About 10 minutes later I had really weird feeling of the vein in my neck (the one where port incision is) pulsation and jerking. So weird! They suggested Ativan (lorazepam), thinking I'm just anxious because of all these back and forth and anticipating the reaction again. I'm supposed to take it "as needed" but I haven't taken it since Sunday - I had no need. My anxiety subsided a lot once I started treatment, to be honest. Mistake - I should've taken it before the infusion.
Anyway, after 0.5mg of Ativan, I finished up fine at half speed. I asked my nurse to write down the following plan for next week: only 25mg of Benadryl (that much is still bad but so much better than 50mg), and doing half speed for at least 30 minutes. And I promised I would take Ativan before coming in! I understand they want me to get out of there as soon as possible (and honestly, I don't want to spend an extra minute in the infusion chair) but I think having it at half speed definitely helps. With full speed and 3/4 speed, and all the interruptions, it took 3 hours yesterday! With half speed and no interruptions it will be 2.
I will ask about Zyrtec. Too bad I didn't check back here earlier, I should've talked to my doctor about it.
Regarding driving to and from chemo. I had my husband drive me again, but mostly because I had an appointment with "MY" oncologist yesterday and wanted him to be there for all the questions I had to her. She is gone next two weeks so I'm seeing someone else, and it's not as important to me for my husband to be present. We finally told friends I had BC on Tuesday - didn't know how to break the news, and honestly, I was pretty depressed the month between getting the diagnoses and starting treatment, I wasn't ready to talk to anyone but my immediate family. So many people called and offered help, including driving me to chemo. I may take some of them up on the offer.
There is a comfortable coach bus that goes right to the hospital and I took it yesterday. My blood draw was too early in the morning, and I needed husband to drop our teenager off at a carpool meeting place. He drove to the hospital in time for my appointment and stayed with me for the rest of the day (literally, it took all day yesterday - 8 am blood draw and we left at 5!) I would take the bus there and back for all treatments, but my friend who went through the cancer treatment with her fit-always-been-healthy 36 year old husband said "you will only do it until your white cell count drops to the floor. Then you wouldn't want to be on any public transit, especially in the fall or winter".
Which brings me to the flu shot. Same friend suggested I get it as soon as we knew I was doing neoadjuvant chemo. I mentioned it to the nurse in passing (not even at a formal appointment) and they immediately came with a syringe full of vaccine! I got it a week before starting treatment. I wonder why they don't just do it and recommend it, without patients asking!
This should go somewhere in the sticky about "what to do if just diagnosed". It may already be there, btw.
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I'm on Taxotere rather than Taxol, but the skin-related side effects are similar. I noticed about a week ago that my fingers are unusually dry so I've been using extra lotion on them. My nail beds also look sort of flattened out. Now this may sound really off the wall, but about a week ago my phone started to reject my fingerprint! Coincidence?
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Wondering about hair loss. I'm not doing cold caps, even though they are offered at my facility. It's just seems like a lot of hassle to me, and would add to the time I'm there. I also have Raynauds, and having something cold on my head would set it off for sure, It has more to do with how cold I a in general than with actually touching something cold.
Anyway, I just had a second infusion of taxol yesterday, and will probably start losing hair in a week or two. I have pretty short hair in general (short bob), and conveniently I have my regularly scheduled appointment for a haircut tomorrow. I was thinking about asking my stylist to do a very short cut - maybe like a boys crew cut, so that when it start falling out it doesn't make so much mess. Maybe leave a little bit more in the front. I'm going back to work on Monday for the first time in three weeks, and I don't want my coworkers to be shocked. So, I don't want to shave it preemptively, but I don't want to just get my regular cut, because it will be a mess falling out. My hair is also very-very thick and curly. Even if I leave crew cut, it will be a lot of hair to lose. What did you guys do in anticipation of losing hair on Taxol?
Bittersweet: my stylist is the only person in the world I trust to cut my hair. It's so hard to find stylists who know how to handle curly hair. He has curly hair himself, so he totally gets mine. He is nearing retirement and cut back his hours, so receptionist at the salon suggested in May that I scheduled my appointments through the end of the year. Looks like I will have to cancel all of them now
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Thanks, KB! I totally get it about swimming and hair - mom to two swimmers - boys, and have a niece (also a swimmer) who has same unruly curly hair as I do. I think my niece is the only teenage girl I know with short hair, but she looks gorgeous. So many girls on my son's team struggle with long hair - cap falling off during the mile, for example, is not fun!
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farawaytoo... I had my hair buzzed very very short (quarter inch?) right before I expected it to fall out, and then just wore hats or my wig. I didn’t want to deal with pulling strands out, or fishing it out of the drain!
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Brightness, my hair began to shed after my 4th cycle of weekly taxol. No pictures, but it was a slow shedding which looked like my part was widening from weeks 4-8. After week 8, it was so sparse and patchy I began wearing headcovers all the time.
FarAwayToo, we are both Colorado BC gals! Definitely look up Domus Pacis in Summit County if you haven't already heard about it. Amazing resource. Once I have time, I'll write up our respite trip in these forums to let others know about it. Sorry you had such a stressful infusion. I too was super blue between diagnosis and treatment. My experience was that once I felt like I was DOING something to fight the cancer (recovering from surgery, managing chemo, etc.) I felt mentally better. Also, on the hair front, mine began shedding after week 4. Though it seemed like a ton of shedding, it really wasn't noticable until about week 7/8. At that point, I wish I had it buzz cut. I would definitely recommend a cute short haircut, but longer on top to 'cover' your scalp as hair begins to fall out.
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Faraway- I have a little reaction to taxol and I could control it with deep breath the last three times. Today I can’t, it always happens close to the end of taxol infusion. My heart beats went to 101 so I informed the nurse so they stopped the infusion and let me heart slow down to normal before they can finish up. So next round they will slow down the drip speed so it might help.
I buzzed my hair since September, I don’t think they grow that soon.
Glad I finished taxol #4now.
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I forgot to say that my Taxol #7 was a go yesterday, but only after the nurse practitioner called my MO for consultation. My neutrophils continue to drop every week, and I think she would have delayed me. But they decided to go ahead, while adding in a third Granix injection weekly. She seems convinced that I’m heading for another delay week, but she also mentioned that she wasn’t sure I’d be making up all 12. We’ll see what my MO has to say. The delays are indeed discouraging, but having a break just makes you feel so much better physically. It’s a Catch 22 situation.
The steroids in my pre meds always keep me wired on treatment night, and I usually only sleep 2-3 hours. Last night I only slept a half hour! My brain would simply not switch over into sleep mode. And yet today I’ve been wired and energetic all day! It’s 8 pm and now I’m ready for bed. I did buy myself some Tylenol PM for the next time though, this is ridiculous.
I started my chemo with AC, so I lost most of my hair two weeks in. My brows, lashes, underarm, leg, and pubic hair all went about a month later. The nurse said my hair would probably start coming back during Taxol, and I now see fresh fluffy peach fuzz coming in. I wasn’t quite sure I believed her when she said it, because I saw all the Taxol ladies talking about their hair falling out. But I think she’s right!
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msrobin, I have noticed growth too... the fuzz is a little longer, and a I have few random "longish" hairs (half inch) ... i lost 95% of hair during A/C and am now on week #4 of Taxol
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T-Sue, nice to see another Coloradan here! I looked up Domus Pacis, looks like an amazing program!
Our ski passes should arrive any day now. I have no idea if I will be able to ski this season at all
. We ski Copper a lot, so in winter we are in Summit County about every other week. We also usually take a trip to Steamboat in February. Right now it seems like February 2018 will be in another life. 0 -
FarAwayToo, yes we just got the Epic pass again for our kiddo (love that program) along with Loveland 4 packs. I'm not planning on boarding much this year. Right now my tissue expanders are so tight I'd be afraid of falling and popping them! I think I'll hit the snowshoe trails while my 9yo and husband tear it up :-)
The Domus Pacis respite really was lovely. You could request a week in spring or summer too for a change of scenery. They arranged a boat trip on Lake Dillon, horseback riding, voucher for a pizza joint, a massage for me, and lots of meals for the fridge. When you are having a good day, start on that application! Feel free to message me with any questions.
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I got my flu shot on Wednesday, the day before Taxol #4.I felt pretty tired on chemo day but got over it after getting the steroid.No one had told me I was getting steroids with the Taxol, but because so many of you are talking about it I asked, and lo and behold I have been getting it.And then lo and behold I couldn't sleep last night.I had not made the connection.The nurse told me that often when your white cells are down your immune system doesn't get much of a boost from the flu shot.Great!She said I should ask the MO when chemo is done if I should get a booster. ! They cut my Benadryl down to 12.5 mg.I didn't feel any less stupid or slurry, but otherwise no difference.I iced my fingers and toes.Anybody having trouble with their nails yet?
My hair all fell out with the AC, but my lashes and brows didn't start coming out until after Taxol #2.My hemoglobin has been dropping more than .5 gram with each taxol.At this rate I will need blood in a couple of weeks.Anybody else?
MSRobinRe my feet. They got messed up during AC. MO told me to thickly put on Bag Balm at bedtime, and cover with a sock.Seems to help.
Pingpong.I have this vague memory that we loose our fingerprints.Time for crime!
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Travelhound....My hemoglobin has been dropping every week, started out at 12 then 11, 10, 9, and last week I ate tons of red meat and lots of green leafy vegetables, i am back up to 10.2. You could also try 1 teaspoon of molasses every day. I put it in my tea. It helps!
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Travel - my HGB didn't drop from my taxol #3, it actually went up .3, wbc is 7.3 now, went up .9 so I planned to have my flu shot 3 days before chemo. Will try to eat healthy and more meat so keep my blood counts going. My family suggested me to make my own juice such as beets juice, I am thinking to give a try.
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