Weekly Taxol group
Comments
-
Hi Mary!
I'm in Essex County (Short Hills) and I go to MSK in Basking Ridge. We thought about going to MSK in NYC but didn't want to do the commute for every appointment. I think we are probably equidistant from both facilities in terms of mileage but we just find the Basking Ridge facility to be easier to get to. No Lincoln tunnel! We have good friends in Bergen County (Franklin Lakes).
I think its really interesting that your MO was ok with you taking B6 during treatment, whereas mine wasn't. I guess every MO is different. I just finished treatment (on 8/4) so I'm going to start taking it. What dosage are you taking? I went to the vitamin store and B6 came in different doses so I was going to ask people on here what they were taking.
I hope the neuropathy in your face gets better! I was going to assess my neuropathy at the end of August and if I still feel the same, I was going to ask for a referral to a neurologist to assess the level of nerve damage.
0 -
Hello ladies, Anyone out there who experienced clogged tear ducts, and thus constantly watering eyes, several weeks past Taxol? My last Taxol was July 24. Then about 10 days ago swollen eyelids sent me to the ophthalmologist where eye infection both eyes diagnosed. After a week on steroid eye drops, infection cleared, but eyes watering constantly from clogged tear ducts. MO's office confirms this happens week post Taxol. Anyone else experience this, and if so, how long did it last? Thanks
0 -
MomMom - I have seen posts on that but not sure if it was here. If you go to the search page and enter keyword "blocked tear ducts" you will find a lot of information. I looked at it briefly but not specific to Taxol. It is a side effect of a lot of the drugs we get though.
0 -
Brigadoon - Thank you! Will check that out.0 -
I had sticky watery eyes. These drugs dry us up like a prune! I googled sticky tears and found it was from dryness. I use Thera Tears and that seems to help.
Good Luck!
Mary
0 -
mommom...I woke up on 8-10 after my last taxol 7-22 and thought I had pink eye. I had to call the MO as the regular doc didn't feel comfortable prescribing anything. Turned out just to need wetting eye drops and I used them about a week. Good luck!!
I am back in the chair for my herceptin 'boost' after getting my first rads dose this AM. Antone else looking forward to a time with fewer appointments??
0 -
Ahhh sticky watery eyes, why not?! I am envisioning no eye lashes and watery eyes that make my eye make up run into my eyes and down my cheeks.
I can't wait for NO appointments, let alone fewer. The dentist for my cleaning and my GYNO.
0 -
Thanks for the tips on the watery eyes. Yes, just at a meeting to decide books for next year's book club with tears running down my cheeks:-).
0 -
my eyes watered a lot on taxol and my nose dripped too! 4 weeks PFC and it is starting to get a little better.
Jhodro I had a whole week off from appts 2 weeks ago, the first time since feb!! I was so happy! Now I'm back in the grind post op follow ups, herceptin, rads, Bleh!!!
0 -
Yep, sometimes I wonder why I even bother with the eye makeup. My eyes water so much in the morning that by the time I arrive to the office in the morning I wonder why I bother. Makeup definitely makes it worse but it is better by the afternoon. I sometimes use it as an excuse when that chemo side effect of agitation and hypersensitivity kicks in and the next thing I know I am trying to keep the tears back. I just keep reminding myself that this time next week I will be 3 hours PFC, lol!
0 -
Hi everyone! Hope to seek some advice here. I started my #2 taxol treatment yesterday and had this very bad restless leg syndrome during the infusion. I am pretty sure it is due to the Benadryl as it started during the premeds infusion. My bf told me to calm down and try to sleep but I really can't although I'm drowsy!
Is there any way to prevent this from happening or alleviate this syndrome? Is anyone experiencing the same here? Please share your experience!!
:(0 -
lazylizzie,
I had the exact same issue. After two infusions w/o any allergic reactions, they decreased my dose of Benadryl from 50mg to 25. I still get drowsy, but my legs aren't as bad. The RLS stays with me for the rest of the day. My MO prescribed Ativan for me, which helps a lot. I only take it the evening after my infusion. I worry about getting too reliant on it. I know it's almost impossible to sleep in the chair because your legs wake you! Hopefully, your dr can help you by either reducing dosage or prescribing something to help.
I hope you find relief.
0 -
#3 this Friday - I hope the SE's remain the same. My work partner is out of town for two weeks and I have appts for him this week including one Sat morning. I've been normal on Saturday after infusion so I'm praying that is still the case and I can hold the appointment for him. He was gone for a week in July too after an A/C infusion. I told him he has to consult with me before he plans a trip!
I should be good on Saturday, but I hope he doesn't need me on Monday or Tuesday, because it isn't happening.
0 -
Having a port put in on Friday after 4 rounds of A/C without one. They feel the next 12 Taxol will be too hard on my veins. I am petrified as I have never had Twilight, never had any kind of procedure except the Core Biopsy with that huge needle. Hoping there are no real issues with having the port except being uncomfortable for a few days? Any input is much appreciated! Thanks!
0 -
Hi Classy, I did a post on my blog about port placement if you want to check it out:
her2whoneu.blogspost.com
Also, somewhere on here, if you search, another poster did a long explanation of the process according to her experience. It wasn't bad. In fact, it went way better than I had anticipated. 11 weeks later and it's a part of me. Good luck!
0 -
linzer, thank you so much! Tried to find it but it did not come up. Would love to read it - Thank You, VeraAnn
0 -
funclassygal, I had my port put in just under two weeks ago. I was terrified but it was not bad at all. My neck was pretty sore for a few days, but Tylenol took care of it. And the port area itself was swollen and tender but not really too bad, just what you would expect with an incision. By about Day 5 I was barely aware of any of it, and here on Day 13 I literally go all day without remembering I have a port. And I was expecting to be all queasy and grossed out while I had to endure it, so it is not like I am so brave or anything
I had my first infusion Friday and it was such a breeze not have someone poking around my arm or hand for a vein. For me it was totally worth getting the port.
I had the full knockout, not just twilight sleep, but I have had that lighter sedation with colonoscopies. Don't worry, they will keep you comfortable. You won't really know or care what is going on.
0 -
lazylizzie: i had the RLS too...MO recommended magnesium. It helped but on treatment days I took 1mg to help sleep. Had my first herceptin onlu yesterday and still needed the ativan to sleep due to the benadryl. Good luck!!
0 -
Classy, that's because I wrote it incorrectly - chemo brain! Haha! I've edited and fixed it for you.
Also, curious how you did on A/C. I start second week in October. Do I need someone to drive me? I have had to do that with Taxol because I've needed to take Benadryl throughout to reduce rashes. It would be great if I didn't have to tie people up from work. My husband has a pretty demanding job. Maybe I should have someone come for the first and then decide? Your thoughts? Linda
0 -
Lazylizzie, I had the same restless leg syndrome the night after the infusion, not during. The first two infusions I did feel agitated during the pre-meds (steroids and benadryl) so the doctor increased the infusion time, and that helped a lot. However I still had the restless legs and was up all night, which the doc said was probably due to the steroids, never did get any relief from that.
0 -
Hi Ladies, I am just checking back in because while I was doing taxol I always wanted to know how people recovered afterwards, and thought I would give my input, so here goes:
12 weeks PFC (I am still on herceptin) and the only lingering se I have is stiffness in my hands and fingers from the neuropathy, which is slowly going away. (Never had total numbness, mostly tingling, burning and stiffness of hands). All other SE's went pretty quickly, I got back appetite and taste buds even before I finished. I lost all my hair on AC (before taxol) and did not have any growth while on taxol. I was worried about that as hair didn't really start coming in until 8 weeks PFC, but it is coming in a lot faster now. My eyebrows came in very fast, and my nails held up very well. Some discoloration but I didn't lose any, and they are mostly all grown out to normal now. I started to regain my energy a few weeks after finishing, but radiation really knocked me down again. Other than that, all side effects from taxol are gone (I do have se's from herceptin, mostly shortness of breath and some strange hot flashes that feel like pins are sticking me all over my body !)
Just wanted to encourage everyone that there is light at the end of the tunnel
0 -
Hi lilyrose, jhodro and deblc, thanks for all your input on RLS! I thought this was quite a rare SE as the people around me appeared so peaceful and rested on the recliner except me! will definitely raise this issue to my oncologist...but problem is that I will only see him before #5 (and I'm on #2 now argh). I will probably try to pop two bananas on treatment day next week and see how it goes...fingers crossed.
best of luck everyone!!!!
0 -
I had restless leg at night during a couple cycles too! I thought it was just me. I'm not sure if it was during Taxol only weeks, or when I had Taxol with Herceptin/Perjeta. I didn't think of the steroid being the culprit either. Hmm....
0 -
Hi Linda, thanks for fixing - trying to find it. I actually did really well on A/C - no real problems at all. I had a few days where I needed to rest but never got nauseous, never took any additional pills, no ativan at night, no nothing. I hope you do as well. The Oncologist told me I went thru the toughest part. I am on to Taxol next Thursday which of course is stressing me out. It's that unknown again........just like the port! Ugggh! With the A/C - ate light the first 2 days and then my appetite came back day by day.
0 -
lazylizzie- I had the restless legs during my first taxol infusion and it was so bad that my MO decided to switch me to hydroxyzine- which is a "cousin" to Benadryl. Does the same thing as Benadryl but doesn't cause the restless legs. You take it as a pill instead of infusion so it takes longer to feel the drowsiness that Benadryl in the vein causes quickly. I had hydroxyzine for Taxol #2-12 and never had a reaction or problem. You might want to ask about that.
Jhodro- You get Benadryl for your herceptin-only infusions? I had my first herceptin and perjeta-only infusion on 8/11 and had no pre-meds at all. Just 30 mins of Herceptin and 30 mins of Perjeta and I was done.
0 -
A/C was rough for me. I felt queasy for three days - sometimes I took the anti nausea pills every three hours - trading off different ones. I was also fatigued for the first five days and managed my constipation, but it still made me feel bad. With Taxol I feel fine the first two days and then the third day I'm exhausted. I sit around for two the three days and have mild constipation. Taste buds get whacked the second day and it takes 10 days minium to get rid of the metalic taste that seems to coat my tongue and part of the roof of my mouth.
I am on DD (both A/C and Taxol) so I have had two treatments and I'm 1/2 done. Tomorrow is number three (I'm getting them every other week). I don't see any new hair coming in, but I really didn't loose all of my hair either. I would say I lost about 75-80%. I have stubbies all over my head. My eyebrows and lashes have thinned and I have some discoloration in my nails - toe nails look great.
0 -
Tabbygirl52…Thank you so much! I will keep your inspiring words in my head tomorrow!
0 -
cmp106..yes and met with the MO today asking if I can skip the benadryl and he said no.
the nurse said I should start taking the benadryl before I get there, plus a reg tylenol. Maybe I "forget" and see what happens? My luck I would have some lethal reaction!! I also completed day 3 of 33 rads. 29 to go.
0 -
Found out from my opthalmologist yesterday that my watery eyes are clogged tear ducts. I had this two years ago and went to an opthal plastic surgeon who put a needle in my tear duct to unclog. Confirmed with MO office and my Dr yesterday that this is a side effect from Taxol. It developed 3 weeks PFC! I'm now on steroid eye drops for 2 weeks to see if that helps, but I may have to have them unclogged. Ugh.
0 -
jhodro, From reading these boards for a long time, I think there are very few docs who give any premeds, including Benadryl, for herceptin-only infusions. I was offered saline, which I always refused, and got herceptin with no problems. I think younwould be fine if you skip the Benadryl!
0
