Please share your daily life experiences while undergoing chemo

My husband is starting chemo imminently. He's out doing his daily run as I type. I think we're well versed in side effects and have gotten many tips on this site about how to manage them. Thanks for those. What we'd really like to know is what your daily lives were like during the months you underwent chemo. Was it a total hunkering down period--"See you in four months. Sorry we can't come to the New Years' open House--can't get off the couch." Or were you able to participate in a scaled-back way in family holidays, do some sports activities you did before, handle paperwork, chores, go out to movies, socialize with friends, play with grandchildren, drive a couple hours for family gatherings, etc. Feel free to be very candid.

Thanks, Pratoman, and brava to your wife. Not worried about the hubby hair since he's got a buzz cut for his current "cool bald guy" look! It's just the day-to-day we both wonder about, so thank you for sharing your wife's experience. I hope others will chime in, too.

P.S. I have to shorten my husband's signature one of these years. HW only allows a certain length and the treatments are way beyond the space allotted. Long story short: he went on Zytiga five months ago, all the blood work looked great, PSA down and stable, but wait! A bone scane showed he was riddled with bone mets--many, more than the few he had a year ago. The blood work this past Aug. 2019 didn't reflect in any way all these mets. Maybe it has to do with his high Gleason, low PSA dx. Maybe his cancer has evolved into neuroendocrine. We don't know. But he's starting chemo very soon.

UPDATED SIGNATURE:
Husband 70 yrs (75 now) pacemaker; Agent Orange 6-9/14: blood in urine; DRE suspicious
biopsy 11/14: G 9 (4+5), PSA: 3.32 high Gleason, low PSA
11/14: Lupron 33 mos; 9 wks IMRT 6/15
9/15: .14; 1/16=.093; 4/16=.079; 11/16-5/17=.05 (nadir); 11/17=.08; 2/18 .20; 4/18 0.98;
6/18: 3-4 bone mets; 7/18 3.29; 8/18 9.87 Lupron re-started
Zytiga/Prednisone started 2/9/2019; 2/28/19 PSA 4.02;
4/19 PSA 1.80; 6/19: PSA 1.26 8/2/19: PSA 0.64 thru 10/19 (Zytiga stopped due to elevated liver enzymes)
Bone and CT scans done—many bone mets despite low PSA. Chemo recommended. Just on Lupron and Prednisone 5mg now. (No Zytiga)

Post Edited (spouse21) : 10/14/2019 5:11:18 PM (GMT-6)

I'm going to write a chemo comment in an editor so I don't lose it mid-process.

As to the signature, the limit is 400 characters. Be brutal and abbreviate to the extreme. A lot of what seem like milestones really aren't so much as we think.

Taxotere every 2 weeks 10/17 - 01/19, 31 sessions
Things learned early-
-GET A PORT. After a massive fail to find a decent vein at session 2, I insisted. And we are still using it in my experimental stuff today.
-If he likes the rifle range or hunting, be sure they put it on the opposite side of his dominant shooting side.
-Depending on how they mix the taxotere bag, there could be massive amounts of alcohol pumped straight into his heart. Mine was at least 200ml of 100%, sometimes more. Near intoxicated real fast. No driving one's self home in that condition.
-Get or make a little spacer pad for the car seatbelt to hold the belt away from the port.
-They will offer Grandisetron ? (general name is Kytril) for anti nausea. Accept it.
- They will likely offer at least one, and maybe a chaser, bag of saline. Take it. Helps flush out the alcohol and cuts down on the rough nights.

Make friends with the techs. A happy tech leaves you wondering if they even accessed the port. A grouchy one will ruin the day.
Take in some sweet or snack for the crew and your chair mates

I found that munching on a traditional Chex mix and a big cup of cranapple juice helped keep down the nausea.

Accept the pillow and blanket - as the fluids get in his system, he may (I did) get bone-chilled cold.

Most of my hair fell out. Everywhere.

My finger and toe nails fell out. The fingernails are back. Because the toenails are so messy I sleep with socks to keep from shredding the sheets at night. Did the same for the fingernails early on.

Food:
I didn't lose my appetite until Jevtana. But I did lose my tastes. Go to a camping suppy store like Academy and get a set of heavy plastic eating utensils. Some meals made me sick from the taste of the metals.
Get a bottle of lemon juice. Sometimes that will awaken an otherwise bland meal.

Challenges:
Getting home, I went to the couch, and put it a few hours napping. The next day was iffy, sometimes brutal nausea (they will give you Zofran / generic for that, use it), but by day 3 I was functional.
Day 1, no driving, day 2 iffy
Day 1 will be up a lot, as they pump a lot of fluids that will be passed.

There's more ....

Post Edited (142) : 10/14/2019 6:43:09 PM (GMT-6)

When my husband did chemo, he was able to work from home on the day after his infusion and then a couple of days when his WBC was at it's lowest. Our son-n-law was in the hospital (he has MS) for 5 months and Keith was able to go visit a couple of times - he wore a mask and carried hand sanitizer. He also plays guitar in a band and the band was very careful to only book gigs on the weekend that fell on the third weekend. He tried not to hug people (people love to hug musicians - I think it a law lol) and kept hand sanitizer on stage. The band was great as they really helped with hauling equipment - one of the guys even went out and purchased powered speakers that are lighter. At the house, I would wipe everything down really well with Lysol wipes (which he also used at work) and we didn't go out to eat. He drank lots of Premier Protein drinks and sugar free Poweraide. He chose to have a lower dose of chemo rather than take the additional Neulesta injections.

Feel free to reach out if you have any additional questions.

Spouse 21 - The MO's sort of laughed at the ice mitts idea but we ignored him. We used ice packs and very very cold coke/pop/soda cans that he could hold during his infusion. He also has Renauld's Syndrome so it doesn't take much cold to cut off the blood supply to his fingertips. He sucked on ice chips which he didn't think really helped until the final infusion when he decided he wanted to drink coffee. He ended up loosing his taste buds and had the lingering taste of metal in his mouth for a couple of weeks.

He may have just been one of the lucky ones but he didn't have any neuropathy and never lost any finger or toe nails.

I truly believe that music has helped carry him through this as it gives him a hobby to keep up with and keeps his mind active. During and after chemo I did notice he had more "goofs" while playing - starting in the wrong key, or forgetting what chord came next but in the last year he's become even better and makes fewer mistakes. I run sound for the band so I'm usually aware of any screw ups.

For the chemo doses, he asked the MO to lower the dose. Again, he wasn't pleased, but he followed my husband's wishes. The second infusion was at a 20% reduction and when his WBC remained in the normal range, they increased the reduction to 10%. That had his WBC hovering just below normal range (sorry I don't remember the range numbers) and remained at the 10% reduction for the remaining infusions.

We continual push the MO - poor guy is used to patients who just do what he says while we challenge every word. LOL

Best of luck to your husband Spouse21!

It will take a week of so for the port incision to heal up, but other than bumping the seat belt (until I got a spacer pad), I've had no issues with it bothering sleep or motion. Mine has been in since Nov 2017 and gets used sometimes weekly. In bad weeks, it has been used daily.

Mine is a Bard Power Port.

As to chemo dosage, mine was slightly lower than "standard", but I had infusions every 2 weeks instead of the usual 3 weeks. So in total, over each 6 week period, I was getting more than the normal.

I had a dismal time with chemo. It forced my resting pulse rate to above 130. It was all I could do to move from one room to another when I had to go urinate or eat. Went on for months before a cardiologist determined there was nothing wrong but that chemo had just messed with the signaling to the heart on how to act. I got put on a beta blocker (metaprolol) that mostly works, but the issue is not gone. Given that the chemo did not really help knock down the cancer, either in the scans or PSA which shot up by over 300 pts during that treatment, I cannot say I am pleased, nor am I happy about Cabazitaxel being the next treatment up, having landed in the VISION trial, but on the non-drug arm. Nausea also had not been a problem for 4 years reared its nasty head as well, which I still cannot find a reliable way to deal with other than vomiting about every other day. For me, chemo sucks.

Hi, I had 6 rounds last year. I posted my experiences for the first couple of rounds. look under the title '4 days on Taxotere' if you're interested.

My main takeaway was that SE's start a day or 2 after the infusion, are cumulative, and in my case included some fatigue, loss of body hair & beard, brain fog, loss of taste for about 2 weeks each cycle, loss of appetite. Neulasta helped my WBC count without issue.

During the last 2 cycles i was a part of the EXCAP (Exercise for Cancer Patients) study, which included walking between 3-7 miles daily, and minor strength exercises with bands. The walking was set to increase each week, and I did it.

Best of luck with the experience. as an experience, chemo will have a start, a duration, and an end. Life goes on, hair returns, and so will his taste...