Posted by Essjay on Feb 14, 2019 7:46 pm
Posted by Raleigh on Feb 15, 2019 9:57 am
Posted by WestCoastSailor on Feb 15, 2019 12:12 pm
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.
Posted by Essjay on Feb 26, 2019 7:43 pm
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!
Posted by Kims1961 on Feb 27, 2019 9:23 am
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
Posted by luvcurling on Feb 27, 2019 10:14 am
Love your positive attitude and let's get this done attitude - way to go!
Hope your day gets better!
Posted by Essjay on Feb 27, 2019 7:08 pm
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...
Posted by Essjay on Mar 6, 2019 10:20 pm
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!
Posted by luvcurling on Mar 6, 2019 10:32 pm
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.
Posted by Hocklem on Mar 7, 2019 8:47 am
Posted by ACH2015 on Mar 7, 2019 9:36 am
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.
ACH2015 - Andy.
Posted by Runner Girl on Mar 7, 2019 9:45 am
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
Posted by Lacey_adminCCS on Mar 7, 2019 9:56 am
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.
Posted by Essjay on Mar 7, 2019 10:35 am
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...
Posted by Raleigh on Mar 7, 2019 11:25 am
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.
Posted by Essjay on Mar 8, 2019 2:16 pm
Enough moaning! Ok the happy face is back on now 😁
Posted by Razma on Mar 9, 2019 3:17 pm
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. ❤
Posted by Essjay on Mar 10, 2019 12:07 pm
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 😁
Posted by Essjay on Mar 19, 2019 1:24 pm
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!
Posted by Kims1961 on Mar 20, 2019 10:39 am
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!
Posted by Lacey_adminCCS on Mar 20, 2019 4:34 pm
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!
Posted by Essjay on Mar 20, 2019 5:49 pm
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!
Posted by Raleigh on Mar 25, 2019 10:21 am
Spring is on it's way so things are looking up. Enjoy.
Posted by Hocklem on Mar 25, 2019 1:58 pm
Posted by ashcon on Mar 25, 2019 2:38 pm
Good to hear from you...(I've been observing this conversation from afar...) You have 2 more treatments after this one, yes?
Glad to hear you've got your game plan on. It's funny, you finally figure out the unique tips and tricks to prepare for, then manage all the effects and side-effects of treatment, just as you're nearing the finish line. When I finished my last chemo session, I almost said to the chemo nurse, "Why stop now? I finally got this figured out!"
And then I went out for a big lunch and a rousing game of cards at home with my family.
I'll be thinking of you this week.