Weekly Taxol group
Comments
-
Hello,
I hope you dont mind if I join as a husband. My wife prefers to stay away from reading but I like to know as much as I can and I find these threads are wonderful. So, she just finished her 4th AC infusion and had very little SE other than fatigue. She is doing the dense dose, or every other Tuesday round. She starts dense dose taxol Tuesday Sept 3rd. I am very nervous as I dont know how she will react to it. I was just getting used to the AC treatment routine! I know everyone reacts differently. Can anyone offer advise? Thanks, Joe
0 -
Welcome JDB53... I am on round 22 chemo, finished AC 4 courses then started weekly taxol sessions... I have had 9 weekly round taxols and tomorrow will be round 10. I will have 12 in total so I am down to 2 after tomorrow woohoo! I had many side effects with both types of chemo...AC was worse than taxol in my case... It would do you well to read from the beginning of this thread as we all have different experiences and I found alot of information here very helpful... My side effects were extreme and I see many others here had far less so i wont go into my individual case... But wanted to welcome you to the group... I will say on the recommendation of many here I take L Glutamine B6 and B12 daily they are suppliments and I can truly say though I have many side effects I do credit these for keeping the neuropathy at a minimum.
0 -
Thanks Rose. The neuropathy scares me the most.
0 -
Welcome JDB63 -- we're glad to have you aboard. Romanticrose is correct, we all respond differently to chemo. I sailed through AC, and am one who finds weekly taxol overwhelming. I don't know about the DD Taxol. My doc doesn't allow supplements, so we have been treating the neuropathy with Gabapentin (Neurontin). It seems to be keeping it at bay -- at least it keeps me from tingling and hurting, I still have numbness in my fingertips, lips and gums (and a little in my feet).
I am someone who likes to read everything, but it is very important to remember that we are all different... and what happens with one person, may not happen to another... also what works for one, may not work for another. Finally, all of us have docs with different philosophies. I personally would be taking supplements if my doc allowed it, but she won't. When I did the research to prove her wrong, I found that there are studies that support some supplements, while there are also studies that show the same supplement to be dangerous (from a cancer perspective).
Glad to have you aboard... you might also want to join the July chemotherapy group... there you will find others at the same stage as your wife.
0 -
For those of you who are getting ready to start rads, there's a great thread on this forum titled...SUMMER 2013 RADS. You'll find all kinds of tips, support, & advice there.
Best wishes
Paula0 -
6cats- I think the best approach is to have no expectations about what may happen one way or the other. Then adjust for what does. I cant wait till this phase is behind her!
0 -
Honeybair, i didn't know you could be radiated 2 times? When did you have the lumpectomy with radiation? You got a reoccurance then had a mastectomy? UGGh! I HATE CANCER!
0 -
Hi everyone!
I'm new to this site, and pretty new to breast cancer as well! I'm so thankful to have found this site as there is so much great information on here! I was diagnosed in July and also had a lumpectomy in July. Due to my margins not being clear, I had to go back in August for a re-excision. Those margins were also not clear - although only DCIS no IDC seen. I'm heading in tomorrow for another re-excision. Hoping for clear margins this time around! After meeting with my oncologist last week, I discovered what exactly HER 2+ meant and what it means for my treatment. Once I am done with surgeries, I will begin weekly Taxol for 12 weeks in addition to receiving Herceptin every 3 weeks for a year. I'm fortunate in that my doctor is from Dana Farber and is up on the cancer research, but I can't say I'm not concerned about what this treatment will be like. I went in for a baseline echocardiogram today so that I can even begin these treatments. Can any of you share with me what your experiences have been if you have dome the Taxol/Herceptin regiment? I would be grateful for any information!!
0 -
jeang - I did weekly Taxol/Herceptin for 12 weeks, followed by Herceptin every 3 weeks for a year. I have one more Herceptin to go! I found weekly Taxol to be pretty easy - much easier than I expected. From reading others' experiences on this board, I think most of the women who have a lot of side effects from Taxol had adriamycin/Cytoxan first - and the side effects are cumulative. My own experience: I had no nausea whatsoever. I never had any taste changes - food tasted good, and I seemed to crave carbs. The steroid I got in my pre-meds made my face flushed the next day, and made it hard to sleep the night of infusion. I didn't have any nail problems during chemo, although now my fingernails are thin and brittle. (I'm about to start using something called "Rejuvacote" which is supposed to strengthen nails.) I gained weight and am still trying to get rid of it. I did not have any problems with white blood cell count, but my hemoglobin went into the "anemic" range, which meant I had to struggle a bit on stairs. It never got low enough to require a transfusion, but that sometimes happens. I did go to the gym throughout chemo and walk on the treadmill for 30 minutes or more, 3 or 4 times a week - and I think that helped. After my first infusion I had diarrhea, but mostly I had constipation. If I were you I'd stock up on over-the-counter stuff for both problems. For constipation the things that worked best for me were Sennokot pills and Smooth Move tea. I started getting a bit of neuropathy in my feet after about 3 weeks, and started taking glutamine powder (30 grams per day, divided into two "servings", mixed with a liquid of your choice), and vitamin B6 (100 mg per day). My chemo nurses gave me some glutamine powder called "Glutasolv", which comes in convenient 30 gram packets, but when I was finished with the samples I just went to GNC and bought a tub of the stuff. These two things seemed to take care of my neuropathy. Oh, I had bloody snot (sorry, TMI) pretty much throughout. I never actually had a nosebleed, but whenever I blew my nose...you get the picture. I am already on omeprazole for heartburn/stomach acid but I found I needed to take an extra Pepcid sometimes.
I used cold caps to save my hair, and they worked perfectly on the weekly taxol. If you're interested in more information about cold caps, there is a discussion board here in the "help me get through treatment" section. (I can't seem to copy the link on my stupid work computer.) LeslieVilla also posts on this weekly taxol board and did cold caps with good success.
Good luck with your upcoming surgery - third time MUST be the charm for clear margins, right?
0 -
JDB53 - I just finished #4 of my 12 weekly Taxol (I previously had 4 dose dense treatments of Epirubicin and Cytoxan). So far, the first night, Monday, I experience hot flashes and sometimes I can't sleep because of the steroid. The hot flashes become less frequent throughout the week but usually on Wednesday I start to get some lower back pain. I've been going to my chiropractor every week though and that has helped significantly. Last week I started experiencing some pins/needles and numbess in my left big toe. So far (knock on wood) that is the extent of the neuropathy. I lost my hair with the EC and I swear though, I'm sprouting some peach fuzz now on top, but we'll see how that goes.
The nurse yesterday said my hemoglobin has been decreasing and I should incorporate more protein and iron into my diet so I started right on that today.
I've also been walking about an hour one day a week and recently started working out on the elliptical at home a few days a week and began to incorpate some weight lifting as well. I generally feel better after exercise and some say it helps with the neuropathy as well.
Good luck to you and your wife. You've come to the right place for help!
0 -
One more thing, jeang (and anyone else) - as part of the protocol for cold caps, I was told to drink as much water as possible on chemo day, to flush out the chemo drug as quickly as possible. I drank and drank and drank some more. Maybe that contributed to my relative lack of side effects. When I'm at the infusion center getting my Herceptin, I really don't see anyone drinking very much (or any) water, and I don't know if the chemo nurses even mention it. I think they talked about it at my chemo class, but not after that. Anyway, just a thought.
0 -
Hello All,
It's been awhile since I've been here and wanted to check in on everyone. I'm 6 weeks PFC now. Feeling more energetic but have some muscle weakness that is bothersome. My legs are weak and give out sometimes and get very sore easily. I have hair that's I can pinch now - it's so soft.
I still have neuropathy in my feet and fingertips. Just walked Disneyland for 3 days - my feet didn't love me for that. But my heart was happy.
I'm walking at the gym and trying to strengthen my core. I have surgery in a couple weeks so I hear a stronger core will help with recovery.
I wish you all well and think of you often. Wondering how you're doing and praying SE's are minimal.0 -
New side effect - edema only in the left leg and foot. It's a different color than my other leg too. I had a left leg injury two years ago that I thought might be causing the differential swelling, but the doctor in charge of that injury follow up said it is not due to that issue and suggested that it may be a blood clot. I'll have ultrasound to find out, once the authorization is processed. Next week is 10 of 12. Am looking forward to finishing Taxol and having the month off before radiation.
JBC53, Romanticrose and 6Cats and aeryno are all right - there is a lot of variation in SE and SE treatments. I came to this site because I wanted to find out the range of experiences of women on weekly Taxol. I was so glad to see this thread. It has been very helpful to have a sense of how my experiences align with others. It's calming to know that one's SEs are not unique, even if they are more extreme than others at times. This site has been very helpful.
0 -
very helpful. Thank you, Soteria205 for the information on radiation. I'll start radiation at the end of October.
0 -
Aeryno, proftnbc and others,
Thank you for your response. Aeryno, our nurse did tell us that hair does start to come back with the weekly doses. My wife is doing the dense dose version which is basically the same amount as you but in a shorter time period. Ill check in and let you know how it goes when we start next week. Best wishes to all of you wonderful ladies!
0 -
LeslieVilla, I had 25 sessions of radiation 12 years ago this upcoming October to my right breast following my lumpectomy. I am now 10 days post my modified radical mastectomy and total lymph node dissection. The good news is that no cancer was found in any of the 12 nodes, but pathology report did find an invasive lobular carcinoma of the right breast which was too small to be imaged from my previous MRI's and mammogram. A large mass was incised from under my right arm, but according to my surgeon may be small enough so that I can avoid further radiation. I really had a very positive report and my surgeon was totally surprised that no nodes were involved. I am feeling pretty well and opting for no reconstruction at the present time. Just want to get healed and get on with my life. I responded really well to my chemo according to the pathology report. It is good to be toward the end of this journey though I will continue the Herceptin infusions if able.
For all of you who are new here, welcome and know that we are with you every step of the way. I have drawn great strength, comfort and knowledge from all posts. Sending hugs to everyone.
0 -
Tomorrow is my number 10 dose!! So looking forward to reaching number 12 in a couple weeks time.
My worst SEs have been the blood in nose all the time (not bleeding nose), feeling very tired and lethargic esp day 3/4 after, a tickly throat and feeling hungry all the time - appetite/digestive issues - so have put on about 10kg which makes me feel even more lethargic!! Plus toenails went white and funny and very slow growing. Had the odd pins and needles in hands/feet but it has been few and far between.
Hair is growing back but ever so slowly - nothing like normal rate at all.
I have been for my radiology consult and measuring up appointment and I will hopefully get an exact start date for that soon - will be October some time. I will be having 30 treatments over 6 weeks.
I actually feel grateful that I have got through this as well as I have really as it is a BIG thing. Hopefully rads will go ok too.
Feeling for all of you during whatever stage you are at - you are all certainly Brave and Strong women and I take my hat off to you all.
Love and light xxxxxooxxxx0 -
#10 Tomorrow for me!
Ladies, have any of you developed tiny blisters on your feet while on Taxol. I was thinking they were bug bites, but they don't itch. Very small, pin-head sized...
0 -
6cats, I do remember having that in several areas.
0 -
jacee, glad to know I'm not the only one... it sometimes is hard to know side effects from general life symptoms.
I have two weekly Taxol left... then on to Herceptin only for the next nine months. For those who have completed Taxol, tell me about "bounce back". People keep telling me not to expect to feel good too quickly... what does that mean?
Anyone on this thread that also has fibromyalgia or chronic fatigue syndrome? I'm feeling like I'm in a perpetual flare and will be so glad when the weekly chemo ends.
TMI ALERT*** Pain with sex... searing pain for me, anyone else, what has worked (if anything).
0 -
6cats~~There's a thread on here titled, " Yippee, I found the solution for painful intercourse." There's excellent advice on there.
I finished 12 weekly Taxol on May 17. I got a little stronger every single week. Then I did 30 rads and I'm still trying to get back my strength back. Of course, its been less than 3 weeks since finishing, and I've had severe burns to deal with, but I'm getting better and stronger everyday.
Blessings
Paula0 -
Ok friends, I have finished round 11 of taxol and have one more round on Tuesday to go. The last two days my toes are killing me with tingling??? They feel like they are on fire. Percocet 5 is barely touching this. I don't like to take a lot of narcotics but this hurts. I pray when this is done the pain goes away. On another note I have my LAttimus D flap and double mastectomies scheduled for oct 3rd. When should I make the appt with the radiation oncologist to get that set up. I hope I have more energy with radiation then with taxol. It was fine at first but the last two weeks have kicked my a__. Thanks for listening.
0 -
Jill~~Have you been taking L-Glutamine and vitamin B6? It's not too late. It can still reverse the neuropathy.
Paula0 -
Hello All! I don't think I have posted here before, but here goes.
I just finished up my 12th treatment of abraxane/ herceptin {abraxane is the same drug as Taxol in a different "wrapper"} and I think I have started to have some neuropathy in my feet, the weird thing is, I feel like it's positional. It seems to happen more, if I move my head a certain way. For example if I move my head down really fast or if I bend down and touch my toes, I get tingling in my feet. I have already googled this and scared myself, so I am not looking for someone to tell me I have some additional horrible disease, but if anyone has had neuropathy present this way, I would really like to hear from you. It's very strange and disconcerting to me. :~/
Thanks in advance!
0 -
I haven't notice neuropathy like you have. My neuropathy is an occasional tingling in my legs/arms. The feeling is similar to feeling a fly crawling on you. Mine isn't often though, just like 8-10 times a day every day. It doesn't hurt it just makes me swat my leg/arm because I think a bug is on me. I would talk to your MO about your neuropathy. She might be able to advise something to help or switch chemo so you don't experience these symptoms. Some doctors worry that the neuropathy could be long lasting or even permanent. Don't worry though because I heard a lot of times it goes away after treatment ends. Sorry I couldn't be of more help.
0 -
Idont have what you are experiencing but does seam very likely since it has to do with nerves and they do run through your spine. Ask your doc. to make sure
Hang in there and don't ask dr google!!! 0 -
TwinMamaHeather -- I have experienced something similar to what you are experiencing. It actually happened to me while I was being treated with AC. I have degenerative disc disease in my neck... when I don't do my neck exercises, I get neuropathy in really odd places if I don't do my neck and back exercises... and it goes away when I do the exercise.
I do have neuropathy from the Taxol... but it is way different from what I experience from the Taxol. The biggest difference is that it is bilateral. Numbness and tingling from my neck and back is always on one side or the other. For me, the tips of my fingers, the tip of my tongue, lips & gums, and feet (soles & toes) are taxol related neuropathy.
I would describe in detail the type of neuropathy you are having with your MO. You may need a scan because of your "worst fears" but then you may also just need some physical therapy. While you wait for your MO appointment, try to keep up with your exercising... especially your stretching (it might just help).
Many people here will recommend supplements for neuropathy. My MO won't allow supplements, so I'm on Gabepentin. It really helps with the tingling, so I only have numbness. Keep us posted on how things are going.
0 -
6cats ~ I went to school in Columbia, Missouri, I used to drive by Ashland often. :~) My neuropathy actually feels exactly like what you are desrcibing. It's bilateral, tingling/ buzzing in toes/ certain areas of feet, less so in fingers and YES I have totally noticed the tongue/ gums thing, I thought I was going crazy there! So, I am sure it's neuropathy, I have just notice that certain movements seem to make it stand out more, namely bending over to touch my toes where I would be stretching the backs of my legs or whatever. I did mention it to the nurses and their response was "sometimes that happens". I am finished with my taxane, so I am hoping that it will start to wane as my body returns to normal. HOWEVER, I do have A/C starting next, so who knows what that will bring!
0 -
TwinMamaHeather ~ Glad I could help! (I think!)... Yes, if you've got the lips/tongue and gums it is almost always neuropathy... although my doc says that symptom is rather rare. I did AC first... not a twinge of neuropathy on that. BTW... I'm one of those who sailed through AC and was knocked on my butt by TH (only 2 Taxol left).
According to rumor, your neuropathy should lessen the farther out you are from your Abraxane (Taxol/Taxotere). Of course we all know about rumors... sometimes they really are true... sometimes not! We are all so different.
Love your blog... let me know if you are ever on the I-70 corridor -- we could meet in columbia for a quick lunch (somewhere appropriate for your family). I get to Liberty once in a while (my sis lives there).
0 -
Woke up today feeling exhausted and not at all up for heading to get #11. Cried in the car on way in for no reason! Managed to get through it and cried all the way home again!
Is it normal to 'hit the wall' like this?? So tired and exhausted.0
