Weekly Taxol group
Comments
-
Amelia01, I am shocked at the price of these tests in Europe compared to the US. Jeepers! They are literally a fraction of the cost, even if you would add in travel they would still be less than half that in the US. It is mind boggling. I do not know if insurance completely drives these decisions regarding to scan or not, but it is something to ask.
0 -
Taco...That gives me a bit of hope. However, it's been 5 weeks since my last Taxol. Maybe, just a few more weeks before relief.
Iris...How much Gabapentin are you taking?
I had numerous scans before my initial chemo treatment....CT of entire body, echocardiogram. Dexa scan, and MRI.
Hope
0 -
Guys, I'm supposed to start weekly taxol tomorrow but both my MO & the nurses in the infusion room told me that they don't recommend icing for it. They only recommend it for taxotere
I don't know what to do. I found two recent studies showing it helps, & one of them was for weekly taxol at my dose so I'm tempted to do it anyway & just let them roll their eyes at me.(the studies: Japanese study about cold therapy for weekly taxol https://academic.oup.com/jnci/article/110/2/141/44...
Canadian study about cold therapy for dose dense taxol http://www.sciedu.ca/journal/index.php/jst/article... )
0 -
Moth, I'm confused, do they think it doesn't work? A lot of people ice for taxol, so I'm really surprised they would say that. I wonder what the basis of their recommendation is. It has helped people avoid/lessen neuropathy and nail problems caused by taxane chemos! So as long as they are not saying you can't, I would!. You can also cite those articles and say that you did your research. Honestly maybe they need to do theirs as well (not that you should say that of course).
0 -
Shay - it was more that they thought it wasn't necessary. Of course in the same breath they mention that neuropathy is a possible side effect - but they said it was rare at that dosing schedule.
0 -
If it is any consolation, my clinic had never heard of anyone icing during Taxol. Then again, when I told MO that I felt little bitty tingles usually at night she said to let her know if it becomes a constant - otherwise she shrugged it off.
I'd give you my icing socks and packs -- I'm not icing (or at least having done so through Taxol 5).
0 -
Becca953, I paid $1450 cash for a PET/CT that is billed to the insurance company at $6000, not that far off from the price that Amelia01 quoted in Europe. I live in SoCal where everything is overpriced so it would probably be even cheaper away from the coastal cities.
I had no insurance for the first four months when I was first DXd and once my insurance kicked in it was eye opening to see the difference between the cash price and the amount charged through insurance for all medical services. It was the same with all providers I used during that time, including my chemo drugs, the cash price was always substantially lower than what is billed through insurance. If I told you the cash price for weekly Taxol you probably wouldn't believe me because it's so ridiculously low.
0 -
Moth, definitely do the icing of hands and feet! I am on my 7th of 12 weekly Taxol and I already have neuropathy in my hands and feet. Thank goodness, it is very mild though. I have iced my hands and feet every single time, 15 minutes before Taxol starts all the way until 15 minutes after. I can't imagine what the neuropathy would be like if I had not been icing. I feel confident that the icing has helped it from getting bad. I am the only one in my oncology office that ices hands and feet (and I also use Penguin cold caps so I am literally freezing from head to toe!) but at every treatment, another patient will come over and talk to my husband or me about it to get details. I do not understand why the oncologist offices do not promote the benefits of icing!
0 -
- True they should be providing icing at all centers I agree.
- I’m at Sloan Kettering which is second best nation wide and they have these plastic booties that they fill with ice that go right over your feet and plastic hand gloves with ice. They give them to all in taxol
0 -
This is one of the nicest e-mails I have seen and is so true: Thought to share with all of you oink sisters
I dreamt that I went to Heaven and an angel was showing me around. We walked side-by-side inside a large workroom filled with angels. My angel guide stopped in front of the first section and said, "This is the Receiving Section. Here, all petitions to G-d said in prayer are received."
I looked around in this area, and it was terribly busy with so many angels sorting out petitions written on voluminous paper sheets and scraps from people all over the world.
Then we moved on down a long corridor until we reached the second section.
The angel then said to me, "This is the Packaging and Delivery Section. Here, the blessings the people asked for are processed and delivered to the living persons who asked for them." I noticed again how busy it was there. There were many angels working hard at that station, since so many blessings had been requested and were being packaged for delivery to Earth.
Finally at the farthest end of the long corridor we stopped at the door of a very small station. To my great surprise, only one angel was seated there, idly doing nothing.. "This is the Acknowledgment Section," my angel friend quietly admitted to me. He seemed embarrassed.
"How is it that there is no work going on here? " I asked.
"So sad," the angel sighed. "After people receive the blessings that they asked for, very few send back acknowledgments."
"How does one acknowledge G-d's blessings? " I asked.
"Simple," the angel answered. "Just say, "Thank you, Lord."
"What blessings should they acknowledge?" I asked.
"If you have food in the refrigerator, clothes on your back, a roof overhead and a place to sleep, you are richer than 75% of this world. If you have money in the bank, in your wallet, and spare change in a dish, you are among the top 8% of the world's wealthy."
"And if you get this on your own computer, you are part of the 1% in the world who has that opportunity."
"If you woke up this morning with more health than illness, you are more blessed than the many who will not even survive this day."
"If you have never experienced the fear in battle, the loneliness of imprisonment, the agony of torture, or the pangs of starvation... You are ahead of 700 million people in the world."
"If you can attend a place of worship without the fear of harassment, arrest, torture or death, you are envied by, and more blessed than, three billion people in the world."
"If your parents are still alive and still married....you are very rare."
"If you can hold your head up and smile, you are not the norm, you're unique to all those in doubt and despair......."
Ok, what now? How can I start?
If you can read this message, you just received a double blessing in that someone was thinking of you as very special and you are more blessed than over two billion people in the world who cannot read at all.
Have a good day, count your blessings, and if you care to, pass this along to remind everyone else how blessed we all are.
ATTN: Acknowledge Dept.
"Thank you, Lord, for giving me the ability to share this message and for giving me so many wonderful people with whom to share it."
If you have read this far, and are thankful for all that you have been blessed with, how can you not send it on??? I thank G-d for everything, especially all my family and friends.
Sent from my iPhone0 -
Hi. I started a new topic to ask this question, then I was suggested asking here instead. The question was: at what point is the side effects (e.g. neuropathy, fatigue, muscle pains) worst? In my case, they got worse even after completing the 12 weeks of treatment. I'm concerned it'd continue to get worse for another couple of months until it turns to improve later. I would like to know when it will hit the peak and start getting eased. Would you please share your experience? I will appreciate anyone's input. Thanks.
0 -
Sumomo - I quit taxol after 8 sessions because of painful neuropathy and it went away fairly quickly. Some women have trouble with herceptin. I assume you are still doing that. Have you talked to MO about it? Have you started AI's or tamoxiphen? AI's caused me worse joint pain than taxol. Exercise helped me but I know it's a vicious cycle. One hurts so one doesn't get out so one hurts. I've made a real commitment since I finished herceptin and definitely feel better and have more energy and have lost a few pounds.
0 -
sumomo...What treatment are you on? I have horrendous neuropathy from 15 Taxol infusions. I can barely walk. The burning and shooting pains are horrible. I was on 300 mg. of Gabapentin a day to start. After two weeks there was not improvement. I was put on 600 mg. of Gabapentin;again, after two weeks there was no improvement. I've been on 900 mgs. now for one week. Still not seeing any improvement. I take Advil along with it, but it's not helping. I see the oncologist on Friday...so, I don't know what lies ahead, but I can't go on like this. I can't drive. I've been in my house over a month because it's too difficult for me to do anything. If anyone has any suggestions, I'd sure welcome them.
Hope
0 -
Hope- I’m not sure it will help, but have you tried fish oil (3g per day - usually in 1g capsules). Nordic naturals is a reputable brand. Studies showed ithelped prevent neuropathy in Taxol regime maybe it’s anti inflammatory effects would help cure it. In any case it can’t do any harm.
0 -
Amelia...I was told not to take fish oil. B-12 was recommended, so I've tripled my dose.
Hope
0 -
Hi Taco1946. Thank you for your comment. I've finished all the chemo scheduled for me. I just wanted to be happy about completing but the neuropathy and other things got worse after the completion, which disappointed me so I wanted to ask how others experienced. I haven't started Tamoxiphen yet, as I'm now on radiotherapy. I'm now not taking any medication, try to see how things will go. Thank you again for sharing your experience. Please take care. All the best.
Hi Hope, very sorry to hear you have such a severe neuropathy. Unfortunately I'm not taking any medication or treatment for my neuropathy so I have no information to help you. Really sorry for that. On some other forums, I saw some people saying Vitamin B6 supplements helped a bit.
0 -
Nonahope, here is an article on the successful use of acetyl l-carnitine for diabetic neuropathy. https://www.ncbi.nlm.nih.gov/pubmed/15616239 I don’t know how or if diabetic neuropathy differs from chemo-induced neuropathy. Acetyl l-carnitine is an amino acid, for whatever that is worth. I took it when I got a numb big toe, which recurs from time to time, and which I think is related to a bunion and not delayed reactions from taxol. It does seem to help resolve the toe numbness for me. Worth a try, if your oncologist ok’s it.
0 -
Who has changed their tx day? I’ve been reading about timing of SEs. I ended up with Wednesdays because of a trip I’m taking before #1 and my MO’s schedule but now I’m thinking it might be the worst if I want to feel good for weekends? I think I mentioned changing it to the patient education person and she said they don’t really like to do that. Now I’m thinking Mondays or even Fridays would be better.
0 -
Ingerp,
I was able to adjust my treatment days on a couple of occasions, so I wouldn't see why it would be an issue moving it up or back a couple of days. My MO said when I started that if I needed to change my day due to when the SE's hit we could. I work M-F, so in my case I had to time things so the SE's did hit over the weekend. I had infusions on Friday and my SE's always set in Saturday afternoon-Sunday, and I was relatively good to go to work on Monday. I know a lot of people had a couple days before the SE's came, but mine were always 24 hrs. after the infusion. Your infusion place may "not like to do that" because it's inconvenient for them to change the schedule, but not for any medical reasons. You have to do what is best for you.
0 -
Wuh-oh Shay! You're the first person I've seen whose SEs came on so quickly. I have a call in to my infusion center--I know it's not easy to schedule (or re-schedule) these things. I'm hoping to start on Fridays rather than Wednesdays. My MO is not in on Thursdays. I figure I'll go with whatever--I'll let karma take over. ;-)
0 -
Ingerp,
I know, I'm not sure why they came on that quickly...they did say my steroid was a low-dose one so may be that was why?....but it was predictable at least so I was able to coordinate my schedule around it.
0 -
Muy bueno, Shay!
0 -
PatinMN....Thanks for the article.
Hope
0 -
I had first Taxol on Thurs & ugh, the bone pain hit on Sunday.
It's mostly affecting my lower back and hips, areas where I've had problems before.
So does the pain just stay from now on or will I perhaps get a break before next treatment?
0 -
Amelia01, I’ve had Dexamethasone and Benadryl before every Taxol. I’ve never had a reaction. I get really sleepy during infusion from the Benadryl and then bounce off the walls from the steroid! My last 2 weeks of Taxol + Herceptin have been delayed due to low neutrophils, too. I’m getting radiation simultaneously, so it’s been a double whammy. Hoping #9 is a go this Friday. So ready to be done
0 -
- Anyone get Taxol without any Pre-Meds ??
- Onc said no more pre meds at all since I didn’t have a bad reaction.
- Thank you
0 -
Moth...I never had any pain from my Taxol infusions - 15 of them.
idkidk...I had premeds with every infusion. I never had any bad reaction during any of my infusions.
Hope
0 -
Idkidk - I had premed steroids the first two treatments only. The Pepcid and Zofran have been throughout. After Benadryl at the first two and no reaction, they told me to just take Zyrtec at home the morning of treatment. I have heard of reactions during later infusions but they are rare.
0 -
Idkidk - I just got my dexamethasone dropped from 8mg to 4mg on my request. It is important during first infusions to have them just to ensure you can tollerate the Taxol, after that there should be no allergy risk. I think they give them due to standard protocol. I don’t know know anyone who has nauseua on taxol.
Moth- I’ve had some bone pain with Taxol and excercise it away. During my week break I was back to feeling 100% again so it should go away.
0 -
I must be an oddball! I have constant, lingering nausea everyday from Taxol.
I don't get a pre-med for it, but continue to take anti-nausea meds on my own at home. It's not so bad that I feel like I will really get sick, but it's annoying. My last 2 weeks of Taxol have been delayed, and no nausea! I go for #9 on Friday...0
