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Paclitaxel

Paclitaxel

Posted by Essjay on Feb 14, 2019 7:46 pm

Yesterday was my first round (of 4) of Paclitaxel. Apart from a very low heart rate for a while I didn’t show any signs of allergy which was a relief, but I have been taken by surprise by the fatigue. my fatigue levels were at ‘5’ going into this round, the high energy, never sit down, busy person has long gone, I haven’t had the energy to exercise for a few weeks, am not up to snowshoeing hikes any more, I drag myself out for dog walks (or she drags me), and it’s a real effort to do housework, cook, shop etc. And now I feel like I’ve been hit by a bus. I was totally wiped out yesterday, which I put down to the antihistamine. I found myself constantly falling asleep today - took myself off for a short nap, slept through my alarm for a solid 2.5 hours, and still feel like I could sleep forever. I’m hoping I’m not going to be like this for the next 2 weeks before my next cycle as I would like to have some ‘normal’ life! I’m rating my fatigue at ‘7’ today, and I’m anticipating other side effects like joint pain and numbness in fingers and toes -oh the joys!

Re: Paclitaxel

Posted by Raleigh on Feb 15, 2019 9:57 am

I found my sleep days were 3, 4, and 5 days after treatment.  Not only am I having Paclitaxel but Carboplatin and Avastin.   I was also a go go personality and get frustrated that I can't do everything at once.  Foods are another issue.  I have had 5 treatments with one more to go and smells and textures of food are making it difficult to prepare meals.  I have a wonderful husband that helps with meal prep and cleanup so I don't have to spend much time around food.  Love cold food though.  Chemo makes you feel very different about things.  Even watching commercials do not entic me anymore and I loved eating out.  They give you info pamphlets at the hospital but they sure don't cover all the little things a chemo patient goes thru.  Wishing you all the best on this journey.  Live each days to it full potential.  Hugs.
 

Re: Paclitaxel

Posted by WestCoastSailor on Feb 15, 2019 12:12 pm

I took Paclitaxel once a week for six weeks with carboplatin for Stage 3C lung cancer. Mind you I was doing daily radiation too. And it kicked my butt. My son came to visit and while I did daily walks, all the other things we had planned didn't happen. We just sat and talked.

I had swallowing problems (from the radiation) so the 3000 calories the dietician wanted was a challenge. There were a few "sit down with the smooth peanut butter jar and a spoon" meals. For the protein you know. I found staying hydrated was also key to getting over the fatigue. By day 5 I was usually over most of the fatigue and had a day or two before the next round.

The good news was that about six weeks after the treatment I was back up to speed. Ready for breast surgery but that is another story told elsewhere.

Angus

 

Re: Paclitaxel

Posted by Essjay on Feb 26, 2019 7:43 pm

I had my first setback to my chemo schedule today. I’m on a dose dense regime of ACT for breast cancer every two weeks 

My doc said ‘we’d like you to feel a little less crappy before we give you the next dose’

Yeah, ‘crappy’ does describe it!

after feeling like I’d been hit by a bus after chemo, days 4-6 were dominated by intense pain. This coincided with the long weekend, and my husband was away camping in the backwoods so not even reachable! I didn’t know what to do with myself, where to put my legs and arms to make them more comfortable, and there were tears as I wondered how I could do this for another three cycles. I had nothing stronger than advil in the house, and can’t take naproxen or codeine, so painkilling options are limited. I’ve been talking mindfulness with the counsellor and using a mindfulness coach app from Veterans Affairs - early days and I’ve not tried it for intense pain.

In addition to the pain, is loss of sensation in my fingers. This is a common occurrence in our -30 temperatures in Manitoba, but usually temporary. Only, I haven’t been out much, and this is not temporary. There was much poking and stroking with my fingers with me keeping my eyes closed today - my lack of sensation after one dose is a concern.

So, I get a week’s break to try and recover a little more, and then my dose will be reduced to 85%.

i don’t like this drug, and chemo sucks, but I have 3 cycles to go and I can do this!

Re: Paclitaxel

Posted by Kims1961 on Feb 27, 2019 9:23 am

Damn!! Sorry for the swear word but I was hoping it wouldn’t be “too” bad. I so feel your pain...I can’t imagine suffering without the hardcore pain meds. 

Good for you to let the team know. I took it a treatment at a time and they reduced my dosage to 75%....that did make a difference as well as starting pain meds BEFORE the pain started...basically took a Percocet in the hospital parking lot as we left. 

Hope today is better😀kim

Re: Paclitaxel

Posted by luvcurling on Feb 27, 2019 10:14 am

Essjay‍ , so sorry to hear you're feeling so poorly. I'm also not sure how I'd cope without at least some type of heavier duty pain killer when needed, as Kims1961‍ already mentioned, they can be worth their weight in gold. Just in case, something new comes onto the horizon, I do suggest discussing the pain every time you see your team.

Love your positive attitude and let's get this done attitude - way to go! 

Hope your day gets better!
C.

Re: Paclitaxel

Posted by Essjay on Feb 27, 2019 7:08 pm

I had some more mindfulness coaching today, which was great. I’m getting the hang of this brain retraining and think this could be useful especially for the moderate pain. And doing something positive for myself is definitely helping me to feel a little better (numb fingers aside). 

And I’ve found out that there’s a doc who specializes in pain management using CBD oil at the pain clinic in Cancercare, which I think is my next area of investigation. Apparently, there are quite a number of cancer patients intolerant of or reluctant to take narcotics...I’ll share what I learn...

Re: Paclitaxel

Posted by Essjay on Mar 6, 2019 10:20 pm

Had my second cycle of Paclitaxel today, after an extra weeks rest to see if the numbness in my fingers would recover and to give me a chance to recover from the worsening fatigue. My dose was reduced to 85% to try and reduce the side effects and get me back on the biweekly schedule. I’m hoping for less pain, and no worsening of my digit numbness. I have declined narcotics to help with the worst pain...

It was a long day, blood test at 9am, and I was finally ready for my ride at 3pm. I slept through most of my chemo (and lunch) thanks to Benadryl and a change to my antiemetics to stop my dancing feet that drove me crazy last time. It’s a real challenge to wake, negotiate the piles of blankets that I need cos I can’t keep warm on this chemo, disconnect the chemo machinery, and coordinate all the lines and cables round furniture, remember to disconnect the BP cuff, and work your legs so enough blood is flowing to your brain (I have BP depression and heart rate depression on this chemo), and then when you get to the bathroom you have to make numb fingers operate the right parts of your clothing before and after, and then reverse the process successfully all when you are completely drugged up on Benadryl! Of course I’m really not too good at asking for help!

so cycle #6 is done (two to go), and I need all your positive thoughts, to support my mindfulness which is basically all I’m pitching against pain!

Re: Paclitaxel

Posted by luvcurling on Mar 6, 2019 10:32 pm

Essjay‍ I was so hoping the CBD oil may have been an option for you to try.

I'm sending every positive thought I have your way. Try hard to focus on your goals.

Every one of us on the site is absolutely behind you and will offer whatever support we can.
luvcurling-Colleen

Re: Paclitaxel

Posted by Hocklem on Mar 7, 2019 8:47 am

I’ve just finished 4 rounds of chemo and start my paclitaxel next week. I’m scared to death of what this drug is going to do to me. The first four rounds have been hard enough to stay positive and active. I have 4 rounds of paclitaxel and from what I’ve read here there’s not a whole lot I can do to help myself get through it.  My husband has been researching the use of cold ice packs actually gloves and socks that you wear during the treatment to help with the neuropathy. Has anyone tried this? Also wondering if seeing a naturopath, reflexologist, or acupuncturist has helped anyone. I have T3’s ready but I can’t take other meds because of my blood clot and blood thinners that I’m on.  Any advice is greatly appreciated.

Re: Paclitaxel

Posted by ACH2015 on Mar 7, 2019 9:36 am

Hocklem‍ 

With any potential treatment side effects, the best offense is a good defense.

Some side effects can be minimized or treated with medications, such as nausea, or bone and joint pain.

Speak with your oncology team about how best to prepare yourself with preventative medications for nausea or pain. I had 6 rounds of Paclitaxel as part of my treatments. From what I remember, constant hydration and flushing the drugs from your system is very important. Movement and exercise help with the pain as well as recommended medications.

Keep a diary of what and when you suffer any side effects for monitoring and reporting to your medical team.

I can't help you with the naturopath advice - not my thing.

Fatigue, pain and all the other side effects may increase as the rounds continue. Remember they will subside and recovery will come after the treatments end.

Reducing stress and trying to go with the flow, sleeping and doing what you can when you can will help you cope as best as possible.

Keep well

ACH2015 - Andy.

Re: Paclitaxel

Posted by Runner Girl on Mar 7, 2019 9:45 am

Hi Hocklem‍ ,

While I did not have paclitaxel, I did have docetaxal as my chemo.  At the hospital I requested ice bags for my hands and feet during the docetaxal infusion.  They were more than willing to provide them and even had specially made plastic bags with a pocket for your hand/foot to slide into.  I have no neuropathy issues and my toe nails came away unscathed.  I have pockets of separation under my finger nails, but if that's the worst I can live with it until they grow out.  The other thing, as Andy ACH2015‍ mentioned, hydration and exercise.  You need to keep your body well hydrated before, during and after treatment.  As much exercise as you can manage is also a really good thing.  

Wish you well with your remaining treatment.

Gayle - Runner Girl

Re: Paclitaxel

Posted by Lacey_adminCCS on Mar 7, 2019 9:56 am

Hocklem‍ 

Congrats on getting through your first four rounds of chemo. The thought of starting a new drug and having to get through four more rounds must be so difficult but I'm confident you will use the same strength and resiliency to get through. It's great that you are preparing yourself with info on what to expect and reaching out for support.

ACH2015‍ gave some great info.. I'm wondering if Essjay‍, WestCoastSailor‍ , Raleigh‍ have any experience to share to help with your questions?

I wish you all the best with this next treatment, hoping your side effects are manageable. 

Lacey

Re: Paclitaxel

Posted by Essjay on Mar 7, 2019 10:35 am

I was told that neuropathy is an uncommon side effect - I am unlucky. Joint pain is more common - I’m relying on CBD oil and mindfulness to get through the joint pain. I’d love to exercise, but my fatigue is at 7/10 and that is a struggle, and I’m having some proprioreceptor issues, which is a concern for me because I frequently dislocate joints.. I managed some gentle yoga on my first dose of Paclitaxel.
Talk to your medical team Hocklem‍ And tell them about any concerns you have or symptoms you experience during and after your chemo session. Good luck - I’m sorry if sharing my experience scared you...

Re: Paclitaxel

Posted by Raleigh on Mar 7, 2019 11:25 am

I have neuropathy in my feet but my hand are fine.  I find the more I walk the better my feet feel surprisingly.  It is getting up from sitting that bothers me the most.   My feet always seem to be cold so I have started the last few nights soaking my feet in quite warm water for 5 to 10 minutes.  Then I take hemp oil for pain and massage my feet until it is absorbed.  I thought about going to physio but figured I can do as much myself.  My feet have been feeling much better and not as much tingling.  When I first started the paclitaxel my lower back, hips and knee joints were very painful.  I used this hemp oil and it was very helpful.  That pain is no longer a problem.  Not sure where it went but glad it did.  Cancer and the treatments are very unpredictable.  Just have to take it one day at a time.

 My issue now is having scheduled treatments cancelled because the chemo is causing low platelets.  It is frustrating.  Had a treatment on December 28 and next one was February 7th.  Now I have had two weeks cancelled again.  Next scheduled is for next Friday.  This would have been my last treatment.  Seems like I am the energizer bunny, I keep going and going and going. 😄  You just want it to end but then who knows what is next!  Keep smiling.

Re: Paclitaxel

Posted by Essjay on Mar 8, 2019 2:16 pm

Day 3 of my second and reduced dose of Paclitaxel, and I can add tingling feet and another 2 numb fingers to the list - enough already! I feel cold much of the time too - a bit of a novelty when I have been constantly hot since I was 35 thanks to premature menopause. And my knees ache...

Enough moaning! Ok the happy face is back on now 😁

Re: Paclitaxel

Posted by Razma on Mar 9, 2019 3:17 pm

Essjay‍ I am sending all positive to you and hugs to get through this terrible time. CBD products in my opinion are the way to go, I am relying on it to get me through 9 more rounds of Paclitaxel (weekly) myself, 3rd round was yesterday. Bloody nose this morning and not much sleep as the combination of Dexamethasone, Zantac, Benadryl and chemo keeps me awake on the first night, Today it's manic hyper activity, have already taken 1/4 CBD gummies and have 7.6mg pill form as a back up. This helps with inflammation in my sinuses, stomach, and breast area which feels like it's on fire. 
I hope things get better for you, I really appreciate your presence here on this site, you are very courageous and we are all thinking of you. ❤

Blessings,
Stephani

Re: Paclitaxel

Posted by Essjay on Mar 10, 2019 12:07 pm

Hey Razma‍ My Paclitaxel sister!

oh yes, it’s so cruel that they wipe us out during chemo - I’m totally incoherent and useless, and just want to sleep. Then come night time, my legs are a dancing and I can’t sleep, and I’m up to the bathroom every hour! 

I do think the CBD oil is helping - I have joint pain, but it’s not so bad as the last cycle and I am avoiding NSAIDS which my digestive system is thankful for. I’m glad it’s helping you too.

Ive added a numb finger to the list and I have tingling and stabbing pains in some others, and the soles of my feet feel ‘fizzy’. I can cope but I really don’t want this to get any worse otherwise my capacity to return to work will be affected! I’ve just managed to walk the dog in the sunshine which was nice, came home made a coffee and managed to miss my mouth - I’ve done this a couple of times in the past few days with beverages and forks of food, and it makes me feel a fool!

oh the fun we have. I have to laugh otherwise I’d cry 😁

Re: Paclitaxel

Posted by Essjay on Mar 19, 2019 1:24 pm

I’ve done a lot of reading and thinking over the past two weeks, which prepared me for a robust discussion with my doc today in preparation for my next dose of Paclitaxel tomorrow.

I’d researched doses that cause neuropathy, when neuropathy manifests itself, how long it lasts, and more, mostly from journal articles via the university library. I concluded that very little is known on this subject, and there have been few follow up studies on patients after chemo finishes.

My own concerns are that I can cope as I am, but what if it becomes worse - will I be able to use a keyboard with accuracy? Will any other day to day actions be affected? I find it difficult to open packets, turn pages of a book, do fine motor tasks, and my balance is affected by my tingly feet.

Alongside those concerns are my worries about being sure the cancer has gone and won’t return, or at least that I have done what I can. If I stopped now, I would have more to worry about than a little numbness and tingling.

So, we decided to continue as is, reduced dose (which has certainly helped my fatigue) - round 7 tomorrow, nearly done!

Re: Paclitaxel

Posted by Kims1961 on Mar 20, 2019 10:39 am

Essjay‍  This is great news!!! Much like you, I prepared myself for a conversation with my oncologist about the side effects from the chemo .  The reduced dosage helped a lot - didn't alleviate them but also the knowledge that it was my last treatment really made a difference.

I"m connecting with a doctor to discuss toxicity in chemo treatments from a patients perspective...its so important that as patients we are empowered to participate in our care and ask for changes, to see if this is possible.  Good for you that you had this conversation with your oncologist !

Sending healing energies your way!

Kim

 

Re: Paclitaxel

Posted by Lacey_adminCCS on Mar 20, 2019 4:34 pm

Essjay‍ 

So glad to hear that you did your research and had a meaningful conversation with your Doctor about what was best for you. I love how you said "we decided" because you are the most important part of your medical team!


I'm sorry to hear about the neuropathy you have experienced so far. I hope things improve for you. Did the Doctor offer any insights about neuropathy?

You are so close to the finish line. Cheering you on!

Lacey

 

Re: Paclitaxel

Posted by Essjay on Mar 20, 2019 5:49 pm

Thanks guys.

The knowledge about who will or will not suffer from peripheral neuropathy just isn’t there yet. There are known risk factors like those with diabetes and heart disease, but I didn’t tick any of those boxes, but then I’ve found that a lot on this journey. Maybe I have something in my genes that makes me susceptible. We did discuss how most patients experience tingling that goes between sessions, and the fact that I had it from the first dose and it hasn’t gone between sessions suggests I will have neuropathy for some time after chemo finishes, and perhaps even permanently to some extent (if m really unlucky). Now. Have it, there’s not much I can do but learn to live with it for however long and to whatever extent - my role model is my sister who has coped with MS for 15 years - I’ve got nothing compared to her neuropathy!

I slept through most of my session, but I had a moment when I was lying there doing a mindful body scan - I swear I could feel my nerve endings dying in my toes, which are now numb to add to the tingling sensation generally in the soles of my feet. My feet are a little annoying, distressing even. I had a bit of a moment today - roused myself from my stupor to head to the washroom ( which I have to say is not easy when you are doped up and have to negotiate furniture and doorways, unplugging and disconnecting the right bits and managing lines), put my feet to the floor and felt like I was standing on something sharp and pointy. I didn’t know how to move my feet and stood there frozen to the spot and suddenly overwhelmed by tears. I was rescued, encouraged and supported to get to where I wanted to be and back. I hate asking for help, but sometimes I need it, and it’s given willingly and with compassion. It’s a hard lesson to learn.

Ive got medications to knock me out again tonight to counteract the restless legs that I anticipate tonight.

My last dose will be in 2 weeks time all being well, and I’m ready for this chemo phase to end!

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