Weekly Taxol group
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Did anyone experience "cramp like" feelings on the left side of stomach & in their legs after Taxol? I've only had one treatment, which was last Thursday and boy it's really uncomfortable.
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Dodgersgirl - Had the pap, now the waiting game.............trying to convince myself I have nothing to worry about......wonder if I should play the lottery? It feels like the odds are in my favor. lol
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tonyaberryman...I did not have such cramps but I remember my MO describing abdominal cramps as rare but potentially serious side effect. It might be worth reporting to your MO or an MO on call if your medical office left you a number to call.
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tonyaberryman- best of luck with pap results
With Taxol 1, my bone pain was in knees, ankles, forearms, and pelvic area like a painful period. I did have pain on left side and tummy for a couple of days while on AC. MO nurse thought it was intestinal pain and said it would pass. But I agree with Scrafgal-- when in doubt get ask MO
Oh and best of luck tomorrow with Taxol
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so with Taxol 2, after talking with nurse, I only took anti nausea pills on the day of chemo during waking hours. Not having to set alarm clock to wake up during the night to take pills AND taking no naps after chemo even tho Benadryl makes me drowsy, I slept all night last night and so don't miss work today!!!
Riding the premeds so not so bad so far
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Help! I need to vent. I've made it through nine Taxol/Herceptin treatments and have just about had it. I know most people don't have this side-effect, but it feels like my entire digestive system is burning away - despite all of the medication they have me on. It got so bad after four treatments that I was having intestinal cramps almost constantly. They gave me a week off and lowered my dose which made a huge difference. After five more treatments, I'm back to where I was at week four. I'm so torn by feeling like I should finish and feeling that the Taxol is over-kill and I just need Herceptin anyway. I feel like I'm thrashing my poor old body for very little gain.
I have also been warned that the last three doses are the worst. For those of you who have finished - is it really worse the last few doses, or were your side effects fairly steady to the end? If this get's worse, I think I'm out. I couldn't keep any fluids in the other day, from either end, and had cramps so intense I felt like I was in labor. Is it really worth it for the last three Taxols?
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Hi Gals - I've been reading through previous posts, and I don't see any mention of treatments postponed because of elevated liver enzyme levels. I had my 6th Taxol treatment Monday. My MO is cancelling the next treatment and will check my levels again to see if I can resume. I've felt so nauseous and fatigued since I started the AC treatments that I'm not surprised that it's affecting my liver, but I am very concerned.
I've been icing my hands during treatments, but this week I've noticed some numbness in my left hand and foot. Could this be the start of neuropathy? My MO has been very receptive to my request to eliminate the steriods and cut the Benadryl in half, but I'm afraid to cut back on treatments because I am Stage 3C and 17/28 lymph nodes showed extracapsular extensions present. (I entered my profile, but I don't know why it doesn't show on this thread.)
Just a side note - I have had yearly mammograms and had my first 3D mammogram six months before my diagnosis which didn't show my tumor. I noticed "dimpling" and called my doctor. Now I tell all my friends that a visual exam is sooo important!
Thanks for any feedback you might have on the liver enzyme levels.
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Donna Joan - I don't have a comment on liver enzymes but did want to comment on numbness.
I think the numbness could be the start of neuropathy. Check with your medical team. I started taking B12, B6, and l-glutamine to try to stave off neuropathy. Don't know if it will work but there are results out there indicating it might help. My MO said she would recommend I taken them
Ref your profile not showing, did you set it to Public when you added the info? I think by default it is set to private.
As for liver, I take a supplement that is supposed to help my liver. If you are interested, I can send you a link. My MO said it was ok to take
Welcome here. Hope to hear more of your journey. It's us warriors that share that keeps us all stronger!
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I really appreciate this forum. It helps me to feel more normal. Here is my vent, I just had my 8th Taxol and have noticed my hair is starting to grow back. My hair initially fell out with the AC chemo I did. With my hair growing back I have noticed I have an extraordinary amount of peach fuzz growing on my face! Ugh. Has anyone else experienced this.
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gginouves
I finished #12 taxol about 3 hours ago!!! In my experience, some side effects do intensify during the last 3 weeks, new side effects emerge and some SEs go away! I think that it is so individualized that it is difficult to predict exactly what will happen....although fatigue is a constant. I did not have abdominal issues.
During the last 3 treatments, I had some neuropathic twinges and body aches...neither of which happened earlier. It is mild, but I am jumping on acupuncture and oncology massage starting next week. I prefer not to take meds, especially since the issue issue is mild.
With Taxol, neuropathy can increase AFTER you stop taking it, up to a peak at about 5 months later. My medical shared this info with me.
Donna Joan...it sounds like neuropathy to me. DodgersGirl is on target with the B complex vitamins. I did not take supplements but I did pay attention to my diet being rich in B vitamins. Maybe this is why I had no signs of neuropathy until #10 and it remains infrequent/ mild/ episodic. I teach for a living. So I am going to do acupuncture and massage as a precaution. I need my hands and feet!
AnnainMontana..no face fuzz but head fuzz regrowth started happening at #9! Will probably lose it on FAC starting next week.
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Thank you Scrafgal. Congratulations on being done with the Taxol! You should get to take a triumphal march. I'm just really dreading the next three weeks. I, too am taking B6, B12 and L-glutamine. I think it has really helped; that and the ice during the Taxol infusion. My neuropathy is very mild. It's the guts that are a mess. How I long for a salad!
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scrafgal--- congrats on finishing Taxol!! Do celebrate!!
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GG - I quit Taxol after 8. My very painful neuropathy was gone within a few weeks. I never had "tummy" problems. BUT - my MO was almost flippant about my quitting at 8 although I had agonized over it. I was going to do everything no matter how miserable I was. MO said she didn't think having 4 more would make a difference (so why we ask, was I originally scheduled for 12?). Seems like I'm not the only one who didn't do all 12 (and some people are originally scheduled for 9). I've had no SE from herceptin but the AI is giving me joint pain and I wake up with a headache almost every morning. Both go away with tylenol and claritin and I've resumed all my precancer activities.
Update - picked up my new glasses and they really make a difference. Am trying to decide whether to submit bill to insurance since obviously cancer related. Comments welcome.
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gginouves - I did 4 AC treatments every 3 weeks, with some tolerable side effects - 1st week tired, bad taste, constipation (from ondasetron) but the other two weeks were good. So when I started on taxol I thought everything wth be easier. But since the first treatment I had abdominal cramps when in the middle of the infusion that waked me up (here they useably give clementine as anti-histaminic and I would fall asleep almost immediately) and became progressively more intense. At that time they would give me steroids ev and the pain slowed and disappeared. The next treatments it happened again, at the same time. The nurses slowed the perfusion but more or less at the middle the cramps appeared. I didn't want to take so many steroids (they were already given in pre-medication) and we started experimenting. With ended up associating paracetamol (=acetaminophen) and butilscopolamine (here known by the brand Buscopan) and I was comfortable for the rest of the treatments. In the other hand muscular and joint pain still persist (8 weeks PFC), but I didn't felt they were getting worst.
AnnainMontana - my hair also started growing during taxol treatment and my husband said i had lots of little blond hairs in my face, but they fell (I think they were steroids related).
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I called today and begged off of #8 Taxol, which was supposed to be tomorrow. Haven't had a really good day since #7, so I'm just getting the Herceptin tomorrow, then a week to recover from some of the Taxol SEs before resuming. That means no steroids this week, yay! I'm grateful that my onc is agreeable to this schedule deviation.
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Bareclaws, my one week off after treatment #4 made a huge difference. My guts actually stopped hurting! I could eat something other than crackers and oatmeal. Of course, they also decreased my dosage by 20 percent. That helped a lot too. It got me through the next 5 treatments. I'm very discouraged to find myself back at the same point as after #4.
Taco1946, I also questioned my onc about having to do 12. I mean, if the Herceptin is targeting the HER-2 receptors, why I am I also hurting my other rapidly-reproducing cell by using the Taxol, as well? Yes, it's standard treatment method, blah, blah, blah. I'm not sure I'm buying it anymore. I feel like I'm doing my body more harm than good. I've read of others whose onc's were blase about quiting the Taxol and just staying with the Herceptin. I think the doc and I are going to have a serious chat on Monday. I think it's good if you can do all 12, but this just isn't feeling right.
SCM12, I'm glad they figured out something that helped you. I'm fine during treatment, it hits me a few days later. I've had IBS my whole life, although it's been under control for the last twenty years. Killing off my intestinal cells in just wiping me out.
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Thanks, everyone, for the well wishes after finishing Taxol and for providing such support during the process! It feels good to have Taxol behind me!
I wish all of you ladies well, as you carry-on with Taxol.
I plan to check back with you, periodically, to see how you are doing!
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Hi Bmac12 I have moved my radiotherapy. It's going to start July 21st or thereabouts, so we'll go through it at the same time! I asked my doc about having it after holiday not before and she said it would be fine and probably better. I am glad as I'll have more time to recover from chemo.i have a cough too now and am taking antibiotics. I will post which board I move on to on here. It's got to be easier than chemo!
I had my last Taxol dose on the 6th! Gave my fantastic chemo nurse some chocolates and a hug and I was done. HURRAH!
General accumulated Taxol thoughts which I hope will help some of you as you've helped me!. I have (touch wood) kept all my hair using cold capping and Daniel Field hair products. Never needed wig. Also (again, as long as I stay lucky) no nail damage. I used Hydrogel freezer gloves and slippers throughout and used Evonail on nails. some eyelashes and brows gone, which is normal.
Had acc. To my notes grade 1 myalgia and grade 1 neuropathy throughout - basically shooting pains, 'electric shock' feelings and then later the hand and foot pains/pins and needles. Took b12, B6 and D3 vitamins throughout. Used naproxen as main painkiller. No numbness as yet. I had severe stomach pains at first and my dr prescribed Omeprazole.
Had sore/streaming eyes, miserable, it helped a lot to take ordinary hayfever tablets as dr suggested!
I did about 5000 steps a day dog walking and yoga once a week when I could manage it. I was lucky in that all my blood/liver tests were good throughout although I now have slightly low red blood cells. Fatigue was not a big problem. Ate as much lean protein as I could.
I still have pain and swelling on my right side/arm on surgery side. I am praying it's not lymphedema, no one seems to know. Am going to see a lymphoedema physio for treatment to see if it improves.
I took Escatilopram for anxiety and depression and plan to continue for some time. I think it helped hugely although dr said I'd made huge changes in my attitude even before the pills kicked in.
Good luck to all of you! I'll be checking in again I'm sure. You've all been a great help to me. Thank you!
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Shelabela so glad you have only one left! Best of luck with your surgery too
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Taxol #2 last Wednesday. Bone pain SE started up this afternoon hope it is short lived like Taxol
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my MO had started my on claritin starting on treatment day and next 5 days. It really worked for my second week, only taking occasional tylenol.
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Hi, I have been reading this blog for a couple months now. I finally decided to make an account and join you ladies. You guys have been such a good support to one another, reading the blog has been a blessing and I wanted to be a part of it as well. Thank you to whom ever made this blog!! Just got done with AC #3 this past Wednesday, bald on my head but still have my eyelashes and eyebrows somehow, when do those usually fly away? Even though I'm most done with the AC treatments, still feels like a long road ahead with the taxol. God bless you ladies.
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A question for you ladies. I am 3 weeks Taxol PFC and still dealing with nausea and stomach cramps, diarrhea. Do any of you have that still going on!? I am on triple dose herceptin every three weeks.
Also, had total hysterectomy in 2008 with first go round with BC. I never go back for Pap smears or any gyn check ups. Do any of you with lady parts all gone go to gyn?
I start radiation tomorrow.... so ready to be done!
My hair has grown slightly but it looks like a bald baby bird! When does it really start to come in?
Lol so yes that was more than one question 😊
Thank you all
Da
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Dawleswim- nice to hear from you and welcome to a group no one wants to have to join.
I see you still have AC treatment remaining. Are you DD or AC every 3 weeks?
You asked about brows and eye lashes. I have had 4 DD AC and 2 of 12 Taxol so far. I have 2 lashes lower right eye that have disappeared but other than that still have brows and lashes. Hair elsewhere is long gone but have started getting whispy random hairs growing back on my head.
My treatment plan is for a total of 20 weeks of chemo. I am half way done. We can do this!
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Hello All!
I looked over most of your posts and wish I had found this thread sooner.
I just had dose #7 of Taxol and so far I am tolerating it pretty well. I have very mild Neuropathy that comes and goes, very minimal nausea and just starting to loose my hair. I do have pain in my toe nails, so I fear I may loose them. As someone else stated, I truly believe Vitamin B6, B12 and the L-Gultamine as well as a very clean diet plan and 3 power green smoothies a day are all making a difference. Fatigue has been my biggest issue, but I have found that walking throughout the day and ending my day with a 2.5 walk has helped me find the energy I need.
Just curious, what is the average dose of Taxol for you ladies? I am at 80mgDanix5, I just had a pap smear and my GYN told me that now that I have cancer, it is very important that I go back to annual paps instead of every 3 years for ladies over 50.
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HelenFaith- my Taxol is 80 mg, too
How long is your Taxol plan for? I see you are at #7. Did you find SE were cumulative??? Are about the same from week to week ?
Thanks!
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My plan is to go as long as long as cancer is responding well to Taxol. We are going to rescan in mid July and determine based on results. If the cancer is shrinking MO wants to keep going, but if not we will have to look at other options. So far, tumor markers, both CA 15-3 and CA 27-29 are going down.
My SE's seem to change every week, but I have noticed that after a week off the SE's seem to be more tolerable and cumulative over the 3 weeks on and start over after the week off. Does that make sense?
What is your plan? I see we were diagnosed 20 days of each other. I was originally misdiagnosed with pneumonia, but what I really had was a collapsed lung from a pleura effusion that had to be drained twice, but has not been an issue since starting chemo.
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HelenFaith- that is good news about your tumor marker numbers going down!! I don't know if Taxol is doing anything for me yet but with only 2 treatments out of 12, I imagine it's too soon the "check" I am hopeful though as AC seems to have shrunk my tumor quite a bit.
There is another thread on weekly Taxol where many women found success for many months on Taxol. I hope you find the same success! Hope your mid-July scan shows improvements!
Thank you for your SE experiences. I think being mentally prepared for the bumps in the road (aka SE), they are easier to cope with
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Helen Faith
I also receive 80mg Taxol with Herceptin weekly for 12 weeks. Just completed week 2, SE do vary from each week, but it's only been 2.
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The amount of Taxol you receive should be based on your size. I started out at 70 mg per square meter. That was reduced by 20% when the SEs got really bad. Herceptin is based on weight and is usually 2 mg per kg for a weekly dose.
I'm having a chat with the onc tomorrow. The intestinal pain and indigestion are so intense that I think I'm calling it at 9 treatments. I've been doing research on 9 total weeks of Herceptin also. More and more countries are buying into it vs. 12 months. Should be an interesting discussion.
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