July 30, second round of Chemo begins

[Isabelle49]

Seems like it’s been a fast three weeks. So glad I am feeling so good this third week after the first chemo and able to eat better. Trying to bulk up for the next round. Since I don’t have experience with subsequent rounds of chemo, curious as to what I should expect. Should the experience be pretty much like the first round. It wasn’t as horrible as I might have expected, except for not being able to taste food and not having an appetite. The absolute worse part was the fluid overload that occurred between day 2 and 3 of chemo - have some fears that could happen again, but I will be very vocal and will want to be weighted each chemo day before and after the infusion. I seriously could not breathe to make it to our car on the second day, thought I was going to faint. The third day I had to be in a wheelchair because I couldn’t breathe enough to walk. The lasix (fluid pills) worked like a charm and after getting rid of the extra 9 pounds of fluid I was doing pretty good. 

So, asking those of you with experience, will round 2 be worse than round 1 or pretty much the same? BTW when I woke this am, my night shirt was covered with my hair, so I guess it’s started. Not sure when I will take any action on the hair yet, it’s wavy and  a little below shoulder length. Hoping it grows back silver and very curly!!! If only the chemo would permanently remove the hair from my upper lip - Imma bout sick of shaving!!!

Blessings.

[Tom Galli]

Isabelle,

In my chemo experience, symptoms and side effects recurred at the same number of hours after infusion and at the same intensity.  So my second experience was exactly like my first.

Remind your chemo nurse about your fluid retention before infusion. That might result in a re-issue of your lasix script.

Stay the course.

Tom

[Rower Michelle]

Those three weeks did go by fast! Lock and load for round 2.  

[Isabelle49]

Thanks all. Tom, glad to hear round two was a ditto of one. Oh, i will be very very vigilant as far as fluid overload is concerned, considering the most common complication can be heart failure. Will be going over the numbers very carefully with doc and nurses. That will not happen again as it should not have the first time. Blessings to  all.  And, definitely Locked and Loaded, ready for battle!!!

[Isabelle49]

Labs are good for Chemo to resume tomorrow. Will avoid the fluid overload issue by taking Lasix after each round of chemo and monitoring for weight to return to baseline if it isn’t already (lasix would not be taken in this case). Doc tells me that is used to be standard protocol to give patients medication to get rid of excess fluid after chemo, but not sure why that changed. Crazy thing is, the same amount of fluid is given to all patients regardless of their weight, height etc. Though I am sure that does not apply to pediatric patients. So, me at 116 pounds, 5 ft 2 in, would get the same amount of fluid another person at 180 pounds, 6 ft 2 in. Yeah, that’s crazy!!! Just glad we are on the same page as far as the fluid issue is concerned. Blessings to all.

[Steff]

Isabelle-

I'm sorry to hear about your hair...my mom got to the point where she felt like a shedding dog and feared hair was getting into the food she was making.  That's when she decided to shave it...she has short hair to begin with, so it wasn't very traumatic for her.  Her first bouts of chemo were in 2016.  She told me just the other day that the hair on her legs and most under her arms have not grown back, so perhaps there is hope that your hair on our upper lip will disappear and never come back 😊  

[Isabelle49]

Thanks Steff. That hair business on the upper lip would really be a bonus!!!

[Susan Cornett]

Hi, Isabelle. When I lost my hair, it started somewhat slowly. I read on a couple of other forums that I would lose the bulk of my hair within 2 weeks of my scalp starting to hurt, and that was exactly what happened. My scalp felt like it did when I was a kid and my ponytails were too tight. I finally just shaved it all. That was in mid-July. It started growing back in September and my November I had enough to style. I lost most of my eyelashes but managed to keep my eyebrows. When my hair started growing back, it was thick and wavy - opposite of my pre-chemo hair! My eyelashes returned longer, but the hair on my face came in thicker and that has not changed.

I really didn't mind losing my hair - July in Texas! 

Keep us posted.

[Rower Michelle]

Good luck today.  Thinking of you.. x

[Isabelle49]

On 7/29/2019 at 9:27 PM, Susan Cornett said:

Hi, Isabelle. When I lost my hair, it started somewhat slowly. I read on a couple of other forums that I would lose the bulk of my hair within 2 weeks of my scalp starting to hurt, and that was exactly what happened. My scalp felt like it did when I was a kid and my ponytails were too tight. I finally just shaved it all. That was in mid-July. It started growing back in September and my November I had enough to style. I lost most of my eyelashes but managed to keep my eyebrows. When my hair started growing back, it was thick and wavy - opposite of my pre-chemo hair! My eyelashes returned longer, but the hair on my face came in thicker and that has not changed.

I really didn't mind losing my hair - July in Texas! 

Keep us posted.

OH, no!!! The nerve of the hair on your face coming back thicker!!! Ugh!!! I do find some scalp hurting and believe it is connected to the hair loss.Not real worried about going bald, hair is dead stuff anyway and considering we are rapidly approaching August in South Louisiana!!! Would LOVE longer eyelashes - that would be a really good thing, considering I don’t have much now, never did. Thanks so much for the info. Blessings to all

[Isabelle49]

Second round, first chemoday went well. My weight was up 8 pounds at the end of treatment, so I did take Lasix when I got home. Woke up to my weight being only 3 pounds above baseline, so nothing needed there. Borderline nausea, coffee is not gonna happen. Sipping on tart cold juices and peppermints. That and phenergan seems to be working. Haven’t taken lorazepam because of phenergan, but might take on when I get to clinic. Rx bottle says don’t take with phenergan, probably due to the sedation effects. By then it will be 3 hours since i took phenergan and not worried, not gonna be either.

[Steff]

Isabelle - my mom drank Kearns juices during chemo, it was suggested by the dietitian in the oncology dept at my mom's clinic .  While not a great option due to sugar content for daily life, it helped keep some calories in her during the times she did not feel like eating.  Juminex is similar in taste and cheaper, but it has high fructose corn syrup instead of sugar.  Kearns is available in individual cans at grocery stores or by the case at Costco.  Might be an option on those days where nothing sounds good.  

Hope you get to feeling better soon, take care,

Steff

[Isabelle49]

Steff, thanks for the info on the juices. I’ve never had Kearns but hav had Juminex. Blessings to all.

[Isabelle49]

Second day down. Weight post chemo and fluids was still up by 8 lbs. Took Lasix when I got home and this am weight now 123.6, 6 pounds over baseline, but feeling better than the 9 pounds last round. Surely going to take Lasix again after this round of chemo. Other than that, not feeling bad at all.  Must say, worse part is the dry mouth and parched throat from the antinausea meds. Need to remember to take my travel cup of iced water to bed at night, really bad when i wake up. Little full in my midsection, but I think that’s some fluid that hasn’t moved yet. Scheduled for cardiac ultrasound next tuesday to rule out any cardiac problem that may be causing the fluid issues. I don’t think there is, but will see.

Third day today, expecting it to go well. Hair still thinning, but leads to a cooler scalp in this heat for sure. Looking forward to a buzz cut and pixie wig. Wore my hair in a pixie cut for over 30 years and have been saying i was going to do it again for some time. Blessings to all.

[Rower Michelle]

Hi Isabelle

When I started chemo, I somehow managed to get in a visit to my hairdresser. I was armed with pixie hair cuts photos. She totally vetoed all of them. I haven’t had a pixie since the second grade. Didn’t look good on me then, would have been disastrous for me in middle age.  I hope you pick out something really cute but a wig in SLA?  Buzz cut sounds really cool to me!  

 

[Isabelle49]

Michelle, the wig does not sound like a great Idea in S. LA in august. Will want something though for my granddughter’s wedding in November. I did find a pre-tied scarf hat that has the scarf all ruffled like a flower to one side. It’s a pretty red, with gold ink writing on it. The dress I am wearing has a sheer overskirt in black with large red flowers and green leaves all outlined in gold ink. So if not the wig, the scarf.  Once I’m buzzed, I’m sure I won’t be wearing the wig on the regular. I do not do heat well at all.  Going to shower and wash hair in a few, may not need a buzz cut after that!!! Will see.

Third day second round chemo went well. Did retain fluid, but I think everyone does and just doesn’t know it. Taking the lasix and today will probably be last day for that. No nausea or vomiting, thank you greatest God. Funny tongue again, but going to try the peppermint extract lick from a spoon. Dry mouth, making me crazy. I think I will get some Dasani water as it’s the only water I find that reallly wets your mouth and keeps it wet. Blessings to all.