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Lets Talk Chemo

Re: Lets Talk Chemo

Posted by Wendy Tea on Mar 1, 2020 1:06 pm

Laika57‍  Are you able to go with him to the appointments?  It would be a great idea to do that. I know our province hands out a booklet about chemo side effects and when you need to call for help. Do you have a copy of those instructions?  For peace of mind, you might want to call anyway.
Best wishes 

Re: Lets Talk Chemo

Posted by Runner Girl on Mar 1, 2020 4:53 pm

Hi Laika57‍ ,

Chemo affects everyone differently.  His team needs to be made aware of his situation.  I know this has been a very trying time for you and you just can't seem to catch a break.  His health and well being are on the line.  He really should be straight with them, but if he can't or won't you may have to step in.

I had 6 rounds of chemo.  I worked and ran during treatment.  My chemo was on Tuesday.  By Thursday I was feeling the effects.  Friday usually wasn't a great day, but I went to work.  Saturday could be iffy but by Sunday I was on the uptick again.  

To stave off fatigue one needs to keep as active as possible during treatment.  Is he eating and drinking fluids?

Runner Girl
Never stop believing in HOPE because MIRACLES happen every day!

Re: Lets Talk Chemo

Posted by Essjay on Mar 2, 2020 7:26 am

Laika57‍ i agree with the others that you need to talk to your husbands team about what is happening at home.

Everyone responds differently to chemo as Runner Girl‍ says. My experience was different to hers for example, I had a dose dense regime which is hard on the body. I needed help to leave the hospital after chemo and would sleep all day after. I slept 12 hours a night plus 2 hour nap, and definitely couldn’t have worked through this time. Days 4-10 were the worst for me. I did exercise daily as much as I could, and I walked my dog - exercise beats fatigue.

Hubby’s team need to know what is happening because there are side effects to consider. Is he coping with the treatment or does he need a change in his medications. They also need to consider if the disease is getting worse and affecting him more. And then there are other complications like depression as you have identified as a potential.

i would call the nurse who works with his oncologist and have a chat about your concerns, they will be well placed to judge next steps.

Best wishes Essjay
Triple Negative Breast Cancer survivor since July 2018

Re: Lets Talk Chemo

Posted by WestCoastSailor on Mar 2, 2020 10:29 am


The regime that your husband is on is very similar to one that my wife used in the treatment of her pancreatic cancer. It created a great deal of fatigue. So that doesn't really surprise me. BUT it is critical that he be honest with his doctors. Given the track record here, I suspect that you will have the doctor's ear when you talk to them.

One suggestion I would make. Document what you are seeing. Get a notebook and record exactly what you are seeing. It sounds like sleep and activity levels would be the keys. Dates and times. How long, and if you have a sense the quality of sleep? Activity, like walked around the block through to got up to pee. That way the doctors will have an objective criteria to look at not just a subjective "I think he is depressed."

Personally I use the five questions from the book "Picking up the Pieces" daily.
  1. How is my body doing?
  2. What emotions am I experiencing?
  3. When my mind wanders what do I think about?
  4. Who have I connected with socially today?
  5. What I have I done to give myself a sense of peace?
If you don't track it or measure it - it just becomes "he said she said" and the doctors have no way of determining what is really going on.

This is a hard road that you are on and I for one admire your courage in walking it. Your husband is so fortunate to have someone so caring with him. Make sure too though that you look after yourself in the midst of this.

My story: http://journey.anguspratt.ca

Re: Lets Talk Chemo

Posted by Laika57 on Mar 2, 2020 11:16 am

Thanks guys, thought I had posted an update. But apparently it didn't go through. I took him to the ER last night. Fever of 39.2. They gave him tylanol and are running blood cultures, but the fever hasn't come back. The on call doc thinks it may have been caused by the chemo itself. They don't think it's an infection since he just finished a round of antibiotics for a (suspected) UTI. It's up to the oncology team to decide if he has to stay and wait for results or not. They haven't seen him yet. He told everyone I was overreacting. Go figure. Maybe I was. But "the book" says go to the ER any time there's a fever above 38.3.
maybe this would be a good time to talk to his oncology nurse without him overhearing me :)

I quit writing every single symptom down because it was making me paranoid. But I guess I'll get back to it. 

WestCoastSailor‍ good point with those questions. I'll see if I can find a way for hubby to answer them (myself too, I suppose). he already gets mad at me for checking his temperature these days. (Or asking if he knows what day/year it is) So it can't make things worse.
Have you hugged your dog today?

Re: Lets Talk Chemo

Posted by pamnbella on Jun 28, 2020 11:36 am

I had my second chemo treatment on Friday. It went pretty well, I did feel a bit nauseated after and had a headache but it is fine now. The oncologist has me taking a steroid once in the day and once in the evening for the next 4 days after treatment, it's called dexamethasone it seems to have brought on a symptom of a little bit of belly pain that I didn't have after the first chemo. I also couldn't care less if I ate right now but I know it's paramount that I get my nutrients and vitamins in so I do it anyways.

When they weighed me at my second chemo they found out that I had lost 28 lbs in three weeks and  I have been eating but I cut back on a lot of fried stuff, junk food and sugar so I think that coupled with drinking tons more water and the fluid build up shrinking helped that loss. I only have one more chemo before my hysterectomy and seriously I can't wait to get it done and over with.

Re: Lets Talk Chemo

Posted by Trillium on Jun 30, 2020 10:34 pm

This has been a very long day that ended with so much stress. My son (with a cognitive disability) finished his first round of 7 chemo treatments. These Tuesday treatments have been the hardest. He has had a mild to moderate sore throat but no other symptoms. Except, having small clumps of hair fall out which he Then requested a complete shave of his head and beard.

So he was given an antibiotic for possible throat infection and he took it right after chemo in the car. An hour later he has chills and feels unwell. Luckily I carry a thermometer in my purse and have one at each of our homes. So he took his temp and it was 38.1. He really wanted to go home and have nothing to do with any of us until next Monday but after an hour of being home it hit 38.4 and we went to emerge. They have admitted him fir a day or two to monitor and started IV antibiotics.

Some good news! His MRI brain scan  showed no change in his 11 mm lesion on the skull. Woohoo! But, the Dr wants to be sure and speak with the radiologist to get his opinion in more detail. He did say it would be extremely rare as this cancer does not spread there. 

Wishing everyone a restful night.

Re: Lets Talk Chemo

Posted by MCoaster on Jun 30, 2020 11:46 pm


Sorry to hear about the latest challenges you are again facing.   I hope that the antibiotics work quickly.

Very good news about the scull MRI and also that they are playing it safe by checking with radiologist.



ps.   How is the painting going and what about the video games?

Re: Lets Talk Chemo

Posted by Charlie1 on Jul 9, 2020 8:49 am

My husband has recurrent stomach cancer that is now in his pancreas and lymph nodes. He had his second round of chemo on Tuesday and wears a baby bottle for 48 hours. The first round went quite well. This time they have increased it to 85% percent and he will have this every second week. This time he is having a lot of trouble with his energy levels and he could not open up his hand which really puzzled me. He said it did not hurt but he had open his hand with his other hand cause it just would not move. Has anyone experienced this before? 

Thank you