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Fatigue

duffie
Posts: 12
Joined: Nov 2020

Hello,

My mom was diagnosed in December 2020 after her hysterectomy. There was spread to her lymph nodes. She started Carbo/Taxol and was in a Keytruda trial. She had her 8th (and scheduled to be last) chemo 4 weeks ago. She had a Keytruda infusion last week.

From her 8th chemo and since, she has been incredibly tired. She also has numbness in her fingers and toes. The doctor said she could start her vitamins again after the 8th chemo (B-complex, multivitamin, Airborne immune). 

She has been drinking a lot of water and forcing herself to walk around the house but lies down most of the day.

Can you please share experiences on anything she can do differently and how long it could take for the fatigue and numbness to improve. Thank you very much. I appreciate your kindnesses and I pray for everyone's good health.

cmb's picture
cmb
Posts: 730
Joined: Jan 2018

Has your mother reported her fatigue to her doctor? There are a number of reasons that she may be feeling more fatigued than she has in the past including the accumulated effects of her eight chemo treatments, the recent Keytruda infusion, etc.

Personally, I didn't feel too bad during my first chemo phase of Carboplatin and Paclitaxel, but the second phase of Ifosfamide and Doxorubicin really wiped me out. I could barely stand for more than a few minutes at a time. My doctor had to change-up the antiemetics I received on the 3rd day of infusions and add steroids for a few days afterwards. I also went into the treatment center once or twice the week following these infusions to get extra fluids and antiemetics. As I recall, it was about 4-6 weeks after my last infusion before I really better. It may take longer for your mother to feel better since she's taking Keytruda now.

I didn't develop neuropathy until after my last Ifosfamide and Doxorubicin infusion. At the time, the oncology nurse said that it can take up to a year for it to dissipate. But if it hasn't gone away by then it's likely to be permanent. In my case it never went away. But it hasn't gotten worse.

duffie
Posts: 12
Joined: Nov 2020

cmb - thank you for your message! Yes, my mom told her doctor about the fatigue and numbness. The doctor said that it will just take time for these to resolve. She should drink a lot of water and eat well. My mom is just hoping that there are other things she could do to help this process go faster. It is making her very sad to be laying down all day and night.

alicia2020
Posts: 162
Joined: Sep 2020

I think. Lots of us have written here on various threads about our fatigue. It will get better. I pushed myself a bit to get out and walk at least a little, but regardless of what I was doing if that fatigue hit me I would just announce "I have to lay down now!" Like, right now! :)) I would lay there for a few minutes and then be up again. 

Your mother has been through a lot. I think with rest and time the fatigue will lessen.

😎, Alicia

Tamlen's picture
Tamlen
Posts: 319
Joined: Jan 2018

After chemo I was just wiped out. Before chemo, I'd been a marathoner but by the end of it all, I didn't really want to get out of bed much. I was just bone tired all the time and it felt like it would never end. After several blood transfusions I felt better, but there was still this deep weariness I couldn't shake no matter how much I slept. Finally, after several months like that, one day the thought went through my mind, "Well, I can be tired in a chair or I can be tired on a mountain." I started to hike, just short barely-counted-as-hikes at first. The more active I was, the better I felt and the less tired I felt. It really proved to be a turning point for me. I sometimes wonder if I was signalling to my body, "Hey, there, body, I'm still alive. Get going."

I don't know if increasing physical activity might help your mom shake some of the fatigue, but thought I'd share my story.

Harmanygroves's picture
Harmanygroves
Posts: 226
Joined: Jun 2021

I can relate, although I have not been through chemo. Since my surgeries and radiation (which ended July 1st), I've found that like Tamlen, I suddenly have to either sit down fast or lie down, preferably the latter. Today I was all excited to be up and about and feeling energetic, and I was at a local hardware store with a clerk showing me some options for a project I'm working on when it hit me. I apologized to her, and said, "I need to leave right now. I'm sorry." And I left, after checking out at the register. I made it as far as some huge "cubic foot" blocks of potting soil, which were stacked up in the shade of the store front. One was the perfect height for a bench, and another block of soil was along the back, perfect for a back rest. That was where I kerplopped my fatigued self, and I remained there for ten minutes before getting in the car and driving home. 

I think the right idea is to "get busy living," quoting a character from Shawshank Redemption. 

Baby steps. But walking is the way to go. If possible, get a Fitbit, and see if you and your mom can work at walking at least 2K steps a day (or whatever is a reasonable goal). Also, focus on nutrition and filtered water. 

Sending love to all who struggle with fatigue. 

Lyn70
Posts: 59
Joined: Jan 2021

Duffie, Prayers for your Mom. I had my hysterectomy in December of 2020 also.  I agree with the ladies on the site who support walking to boost energy. I am 71 and did 6 rounds of taxol/carbo chemo and am currently doing radiation. I also had neropathy in my fingers and toes.I am happy to report my fingers are much improved. My last chemo was 5/5/21. I find walking outside the best boost for energy and spirit. I try 1 mile in the morning and then a second walk at night in the cooler temps. I don't always do the mile. I no longer challenge myself or chart my steps but rely on a previously charted path. I do some yoga movements I learned in chair yoga like downward dog with a chair for my back, body twists (gently  turning your upper body to the right and left) and foot circles (rotating your lifted foot in circles left and then right). I find walking in my bare feet on my hardwood floors helps my toe neuropathy. Occasionally I may lift a 3 lb weight or use a stretch band but walking is my thing. Hugs

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2905
Joined: Mar 2013

Duffie, we do a lot to our bodies for treatment, and while rest is restorative, with the addition of drug like Keytruda which they are still trying to figure out all of its side effects, I would suggest calling and checking in with the doctors office. 

I was one of the fortunate not to suffer from neuropathy, but fatigue from the radiation was like nothing I had ever experienced.  Again, I would recommend a call to the office to let them know. 

Prayers for your family.

duffie
Posts: 12
Joined: Nov 2020

Hello - my mom has been reading your posts and wants to say thank you for your kindness, care, and advice! She will follow these suggestions and talk to her doctor more. Thank you so so much! 

Ashleyjan7
Posts: 2
Joined: May 2021

Hi Duffie & everyone,

 

My mom is currently going through the same thing. She was dx with stage iv endometrial last September after she was supposed to have been "cured" via hysterectomy for stage 1a back in March of 2018. She had been on chemo which was working tremendously until several months ago when her ca-125 markers kept going up and up. Oddly, a CT/PET she had in mid May showed a significant response to the chemo and a CT she had in early July didn't show anything new either. Her ca-125 continued to rise so her oncologist recently switched her to Keytruda/Lenvima.

What's weird, is she was feeling great on chemo. She was a nurse so unfortunately had to quit her job as she wasn't doing well enough to hold such a demanding job, but doing incredibly well given the circumstances. Even the day after her last chemo she hit the gym and was feeling good. Now since she started the K/L she has has had no appetite (something she didn't have a problem with during chemo), increased BP (the doc just added a new BP med), doesn't drink many fluids, her kidney levels are kind of out of whack at the moment, and extreme fatigue. It blows my mind how you'd never know she was battling cancer while on chemo to struggling on this new med. 

Is your mom doing better wiith her fatigue and side effects now that it's been a few weeks?

MoeKay
Posts: 349
Joined: Feb 2004

I'm sorry to hear about your mom's recurrence and the side effects she is currently experiencing, Ashleyjan.  My childhood friend was diagnosed with Stage IV, Grade 3, endometrioid adenocarcinoma in April 2017.  She was on several chemo combinations after surgery, following which she participated in a clinical trial.  When her cancer progressed, she began immunotherapy treatment with Keytruda/Lenvima.  She experienced a dramatic increase in her blood pressure while on the K/L combination.  Initially, the cardiologist kept adding BP medications.  At one point she told me she was up to six drugs to try to get her BP under control.  My friend began having gastrointestinal issues, including severe vomiting and diarrhea, to the point that she couldn't even take her medications (including the Lenvima capsule) without immediately throwing them up.  Ultimately, she was taken off the Lenvima and now only gets the Keytruda infusion.  Her BP has stabilized and she is back down to one BP medication which she was on for several decades before the Lenvima sent her BP into the stratosphere.  The doctor did try reducing my friend's dose of Lenvima several times, but doing so did not resolve the major issues she was experiencing.  She's been doing and feeling well since she went off Lenvima, and the Keytruda appears to be keeping her cancer at bay at this point.

Wishing you and your mom all the best. 

Ashleyjan7
Posts: 2
Joined: May 2021

thanks so much for the reply, MoeKay and sharing your friend's experience. How awful she went through that but I'm glad she's feeling better now. It is reassuring to hear that, especially after going off the Lenvima that the Keytruda seems to still be working without it. Since posting, my mom's BP has stabilized with the addition of a new med (for now at least) and she has been eating a bit more and sleeping a bit less. 

She had a 24 hour urine test done last week as her bloodwork was all out of whack and has a follow up this evening about it. We're hoping it was mainly from dehydration due to her not eating or drinking as the doc informed her Lenvima can impair kidney function. He said if that's the case, she will have to come off of it. That makes me nervous but I'm glad to hear your friend is doing just fine as far as treatment goes without it. 

MoeKay
Posts: 349
Joined: Feb 2004

Hi Ashleyjan, I'm glad to hear that your Mom's BP has stabilized and that she's doing somewhat better in the eating and sleeping departments.  I hope her 24-hour urine test results were within normal limits and that she can continue on the K/L regimen.  I did talk to my friend after my earlier post.  She told me that her doctor recently told her that his plan is to keep her on the Keytruda for another year (she just passed the one-year mark), because she's doing so well.  She also said that she recently started going back to the gym and is hoping to build back a lot of the muscle mass she lost while on the K/L combination.  Hopefully, your Mom's side effects will continue to improve and she too will be back to the gym in no time!!  Even if she ends up having to go off the Lenvima, my friend said that her doctor stressed to her that the Keytruda is the more important drug of the two. 

Good luck and good health!

Harmanygroves's picture
Harmanygroves
Posts: 226
Joined: Jun 2021

It's such a "one size does NOT fit all" disease. I hope your mom improves greatly removing the medication that seems to be causing issues.

 

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