Getting fat and bald -- man, chemo sucks!

[ketel]

Anyone experience hair coming back after chemo?

I am 8 treatments in (of 12) and now really seeing the hair get thin. Also, chemo has done weird things to my appetite. When "on the pump" I get this weird taste in my mouth and I need to eat something every few hours or I get nauseous. So...what's happened is i have been eating a lot of carbs (pizza, bagels, pasta) that I normally NEVER eat. Add to that, it's hard to get any real exercise in because I am either in chemo week (with pump) or recovering from it (feeling weak and crappy)

The end result: I put on 20 lbs since my surgery in Nov. Crimey!

I know I shouldn't complain. These are vanity issues, but I'd like to get my body and hair back when this friggin nightmare is over

Any ideas, stories to share?

thanks for listening.

ketel

[suzieh]

No worries about the hair. I thinned a lot, and it has come back with no problems. I just had about 6 inches cut off that you could definately tell was Chemo hair, it just was not as healthy as all the new stuff that has grown in. My hair is back down to my shoulders and all healthy.

I know what you mean with the food. You tend to eat things that you would not normally eat, but no worries. Your body will get back to a new normal and you will be able to get all those taste buds back to normal before you know it. I drank a ton of Propel water at room temperature when I was on chemo, and now I could gag at the site of it. So eat the stuff you never want to eat again, you probably won't once off chemo.
Good luck.

[seussfan]

I am supposed to start chemo April 17th and am part of a study (Folfox and Avastin) and my oncologist told me to expect hairloss or hair thinning - with the thinning being obvious. But the clinical research nurse that I talk to at the office said that no one else on this protocol has lost their hair. She said the thinning would be like the thinning I had when I each of my three kids - not really noticeable at all. I guess I held on to that because I needed some good news, but now it sounds like maybe my oncologist is more right here? What is everyone's experience with hair loss?

[missjv]

hi,
well i have been on chemo now for 10 months and my hair thinned but it is still there it is cut short and layered to make it look better and i do hot oil treatments alot so it doesn't look like a broom. as far as eating well i eat everything i can put my hands on. i was told the decadron steroid that is given with the chemo is the weight gain culprit and why i get up in the middle of the night and eat fruit loops.


missjv

[Lifes2short]

Seussfan,
Folfox usually doesn't cause hair loss. At least that seems to be the common answer that has come up on this forum when others have posted.

I did four months of folfox. Lost some hair during the first couple weeks, bu that was it.

Ketel,
It's OK to be vain. Cancer steals so much from us. Don't feel guilty for wanting to look good. Try to think of this is a short term thing. The hair will come back, the weight will go away. Right now you just have to do what you have to to win the fight.

[Monique]

Hello Ketel,

Been there--fat that. Yesterday, I was telling a friend that getting diagnosed with cancer was bad enough, but gaining weight and losing half of my hair was insult to injury. Like you, I started losing my hair later in my treatments (cycle six I think). However, it wasn't truly noticeable until cycle eight. And please keep in mind that I have fine hair. Many people with thick hair can pass as "regular". I responded to my thinning hair by wearing baseball caps for the last couple of months, and, when my FOLFOX treatment concluded, I cut my hair really short. Something, in retrospect, that I should have done much sooner.

Furthermore, I'm happy to report that I've shed about ten of the thirty pounds that I gained. Sure it's taken four months, but it's finally going. Walking at least six hours of the week seems to help, as do low weights. That said, I was too weak to tackle these things when undergoing treatment. Apparently, so said one of my chemo nurses, most people gain weight during chemo. Who knew? Not me. I think MissJV's advice about the hot oil treatments is great, as the little hair I had was extremely dry.

Hang in there.

Monique

[Sweet Peg]

I guess I was different from the rest of you! LOL Food tasted terrible to me so I had to force myself to eat. I LOST about 30 pounds but when my tastebuds came back, so did the 30 pounds!! LOL I wish I could LOSE it again because I could stand to. I DO walk a lot now and have really changed my eating habits, but weight just won't come off darn it!! I just keep plugging away at it.

My hair DID thin, but when it grew back in it was thicker and much darker! I used to have to have perms because it was so thin and straight.....now I just have it razorcut and short and NO PERMS!!! Whooohooooooooo!

Just hang in there, things will get back to normal soon after the Chemo is finished!

Peg

[sean]

I'm only 3 cycles in & I'm in the weight loss category. I was hoping at least I'd come out of this slimmed down.

I've been throwing out spoiled food every day. I buy stuff I like and actually want to eat at the time, but every day is a crap shoot. What I liked yesterday might turn my stomach the next. I have no problem eating if I can figure out what I want, but the portions have to be small or else I'll get gas & cramps later. The only food that I can reliably turn to is my post hangover comfort food - hot & sour soup and gatoraid.

The chemo side effect thing that bugs me the most is finding comfortable pants. My waist keeps shifting shape through the day and week as it blows up and shrinks down. Sometimes its gas w/cramps but most of the time I feel nothing. I wear my pre-resection "fat pants" - 3 pairs of cheapos I got from walmart because I was distended all the time. Some mornings I leave the house forgetting a belt because they fit great and that afternoon I'm walking around the office holding them in a bunch because they'll drop off my waist if I don't. When I do wear a belt I inevitably have to take it off because I start expanding again and I get wider than the last loop. I figure I can go from a 32 to a 38 and back again in any 24 hour period.

[Magnolia]

I was on Folfox with Avastin and my hair thinned quite a bit. I ended up cutting it very short and getting a wig. I also ate like a shark. Carbs helped the nausea and I was getting Decadron as a pre-med and that stuff sends your appetite through the roof!!! I gained over 30 pounds before the Folfox was over. I finish the Avastin later this month, but that's not doing much except giving me a runny, bloody nose. I've lost 13 of the 30 so far, and my hair is coming back in nicely.

[ketel]

Thanks for all the support and personal stories on this subject. I, too, have a runny, bloody nose. Darn thing won't heal. I know it's the Avastin so I don't get too concerned.

As to the Decadron, I had NO IDEA that that was part of the culprit. It's part of my pre-med regimen also. I do get ravenous after my 8 hours in the chemo chair and the food at the hospital blows. So...I end up parked at a BBQ joint or in the drive-thru lane for a happy meal on my way home. I'm not proud of it, but I feel that I have to eat whatever I need to to stave off the dreaded nausea.

I'm going in for scans on Saturday so SEND ME GOOD VIBES EVERYONE.

ketel

[missjv]

hi,
ketel im sending you good vibes for your scan saturday it will turn out great cause i said so. thats what i said to my last scan and so far it is working.
yes the decadron is the culprit on the eating like a freak. i am on my systemic chemo today and i had a chocolate feast i know it is bad but i can't help it i will behave tommorrow and eat spinach.


missjv

[northern lights]

Your stories all sound familiar to mine. I gained about 25 pounds, but they are now coming off. I love hearing people tell me that they are noticing.

During chemo I decided that I was going to eat what I wanted and worry about the weight after. I figured that chemo sucked so much life out of me, if I would enjoy a chocolate bar, or other high energy carb, then I was going to enjoy it and not take any of the pleasure away by feeling guilty. I don't regret it for a minute.

Being part of the military, I have a pretty intense workout scedule, so I figure the weight will go away in its own time.

Be good to yourself.

Sharon

[blueyes]

ketel -- Different diagnosis for me ... I'm looking for various side effects from Avastin. HOWEVER ... yup! a coupla months after chemo finished, hair was coming back! (It seems that many have commented that their hair is different ... color, thinner OR thicker, curly or straight, etc) And -- for me, mouth soreness and lack of taste of most foods made eating unpleasant; milk shakes were a staple. When chemo ended -- and food started tasting good ... what was appealing is just the foods you mentioned. Yup -- the scales started inching upward! Finally (after being off any drug for almost 3 months) -- my tastes are returning to "PRE" all this. Mixed green salads, the more fresh fruits the better ... are taking precedence in my taste buds and desire over those fatty, carby foods.

Advice? Try to do SOME exercise routinely ... walk or stationary bike? It helps in so many ways! Also, focus on something(s) EVERY day that you can express gratitude for (and express is ... even to yourself!). Treat yourself good ... learn to breathe a slower, more even breath than most of us do all the time and maintain that as your new normal breathing!
Best Wishes!