Attack of the Side Effects

[mrb1980]

Hi Folks,

When I started my BEP chemo back in early August I naively believed that side effects would be minimal and I would recover quickly. I was wrong, maybe because of my geezer status. Anyway, here's a roundup, 11 weeks post-chemo.

Hair Loss. I expected this, and it sure happened, and the hair took its sweet time coming back. My hair is now only about 1/2-inch long. Still, I'm grateful.

Anemia/Fatigue. The 3rd and 4th chemo rounds just wiped me out. I made the mistake of going back to work a week after the last round and was in pretty sad shape. My blood took about a month to return to normal. I still don't think I'm 100%, but I'm getting there.

Tinnitus. I've had ringing in my ears since I was a kid, but now it's worse, especially in my left ear. I find myself saying, "What??" a lot.

Metallic Taste. Yep, I got this, too. I lived on ice cream and pudding for five days after each round. It was horrible but was only temporary.

Peripheral Neuropathy. I thought that I'd avoided this dreaded condition, but about 9 weeks post-chemo my right hand started going numb. I now have varying degrees of numbness in both hands and both feet. Geez, when does it go away?

Lung Irritation. The bleomycin treatments affected my lung capacity. I'm better now but not back to normal. Will have tests this month.

Constipation. This happened but ended quickly after the end of each round. For the sake of good taste, that's all I'm going to say.

Fingernails and Toenails. The bleomycin caused red stripes on my nails. Now, some of my toenails are about to fall off! The nails are attached only about halfway up, and stuff keeps sliding under my fingernails. It's very irritating.

I hope this post serves as a guide for guys just starting out, though you may not get all of these effects; at least, I hope not. Since I went through four rounds, the side effects are probably worse than guys who have three. I'm still very happy about the chemo results, but the side effects have been pretty significant.

mrb1980

[Martin]

Hi MrB

I find your post about finger and toe nails interesting, because you are the first person I see talking about it.
I am convinced that my toe nails are growing at half the rate they used to and are much thicker, while my finger nails seem to grow very quickly and really sharp (feels like I could slice skin open with them).
The coloring was ... cloudy ... after I finished chemo, but that grew out over time. I'd be curious to see if others have had the same experience?

You have probably read plenty of remarks in this regard before, but your fatigue may also be a sign of lack of testosterone. If it doesn't get better, that would be something to consider.

1/2" of hair isn't bad after 11 weeks. It takes 6-8 weeks before something comes back at all (I know I started around 7 weeks post chemo).

Besides: you beat 'it'!

- Martin

[jim]

Im about 11 weeks post-chemo too.

My most significant lasting side effect has been neuropathy.

I would describe it as follows:

1. Numbness in hands and feet
2. Pain in feet from walking (mostly on the ball of feet -- feels like walking barefoot on rocks).
3. Lessened dexterity with hands (trouble typing, holding heavy items, etc)
4. Electric shock like feeling in arms when I hold them out at a 90 degree angle.
5. Painless shooting sensation in feet set off by head and neck movements.
6 It feels like it is hard to coordinate walking and my calves feel tight.
7. some burning sensation in shins mostly.

A new drug called Lyrica is supposed to help.

Anyone know a good doctor to see for this stuff in the NYC area?

[Vinny]

Well, I'm about 9 months out from finishing 4xBEP and my big toenails have almost grown out to the point the crusty, brittle bleo marks are gone. It's like watching rings grow on a tree. I don't think I had problems with any other fingernails or toenails.

Peripheral Neuropathy is always present in varying degrees in the hands and feet. These days I'm noticing it more in my feet. Raynaud's phenomenon is also present on cold days in hands and feet. Lyrica probably isn't an option for me, since it's basically derived from the same chemical compound as Neurontin, and the FAA doesn't care for anti-epileptic/anti-seizure meds being used by pilots.

I think the lungs are in decent shape, but it's been a long time since I really exercised (way before the TC episode), so I have no idea as to what damage there might have been.

My hair is still much finer than it was pre-chemo. I keep it a lot shorter than I used to, since if it gets much longer than 3/4 of an inch, it starts to look pretty matted.

[nzsteve]

Hi,

I got marks on my finger nails aswell, but (touch wood) they havent decided to fall off yet! I got white lines and ridges on them all. Theyve all grown out now (last cycle ended start of november), but the nails do seem to be growing alot slower than they did before chemo.

Steve

[Stacy]

My husband finished 4XEP on 11/12 and still has the problem with pain in his feet when walking. Says it's like broken glass or rocks, especially on the balls of his feet. Any idea how long this side effect lasts?

Stacy

[mrb1980]

Stacy, I wish I knew how long my peripheral neuropathy will last. It's very inconvenient but I'm going to try to outwait the condition before I try any medications. I think my body's had enough run through it lately.

Martin, I'm having blood drawn for a testosterone test this coming week. Thanks.

Oh, and I forgot to mention that I also had mouth sores during chemo. I hope I don't scare anyone, but it was an experience I'm not anxious to repeat.

[Don]

I don't know if any of your have read the thread I started about a week ago in regards to Lyrica - the new medication for peripheral neuropathy but if not I would urge you to do so. I have been taking Lyrica for severe neuropathy which was 55-60% disabling . After taking every other medication on the market I think this one is starting to work and I am feeling a little better ( hope these are signs of better things to come). For more info go to thread-New Medication for Neuropathy- in the news and announcments section. For more infor on Lyrica go to www.Lyrica.com or www.neuropathy.org


If you have tried any other meds for Neuropathy and had no luck I would definitely reccommend taking Lyrica - I have gone from 55-60% disabled to 35-40% disabled in 1 1/2 weeks!!!! Hope this info helps!!!! DON

[Scott]

I think this one is starting to work and I am feeling a little better ( hope these are signs of better things to come).

That's very encouraging news!

[amorgan74]

Another Odd Side Effect

Wesley has experienced much the same thing as most of you. He finished 4XBEP in July and is still having problems with the neuropathy in his feet. Most everything else went away but at the site of the I/O on his left hip he says there is still nerve growth and he said it constantly feels like it's "waking up". He said that his mid thigh area on both legs have big spots about the size of a grapefruit that have no hair and his legs have the same feeling you get when you have on wet jeans. He said it's really weird to describe but I think I know what he's talking about. He also never got any kind of cold except maybe one during the beginning of Spring allergy season here but now it doesn't take much and he's got a sniffle bug. He also says the ringing in his ears has gotten better. I know that the chemo has also had a minor effect on his memory skills. Now some of it's probably selective, he's still an average male, but sometimes we go places and he misses a turn or you can tell that there's one little piece of the puzzle missing and as soon as he figures it out he's back on his way.

Mrb: Getting the testo level checked and corrected if need be will take care of some other issues that may be going on that appear after chemo but may not being directly related to the drugs but to the hormonal changes. It's not a quick fix, overnight solution and may take some experimentation with the dosage if you need it. The most important thing is to take the meds if you need them and give them a chance to work. I hope your side effects get better as time goes by.

April

[jdunn]

Josh is doing great 8 mos. post chemo. Only thing he complains about is a little bit on hearing loss and ringing. Also, his hair came back nicely at first but seems to be real thin and fine now. I was going to check with his doctor to see if there was anything he could take/use to help with hair growth. Or Should we just be patient?

[Martin]

it is rather common for hair to have different texture, possibly even different color, when growing back after chemotherapy.

mine came out same color, but very fine and curly (it had always been straight). it has since gone back to normal, though.

- martin

[laidback93]

Mine came back finer and thicker this time. It also is a little blacker than it used to be.

The only thing that bothers me at the moment is ringing that I get every now and then. That and I still have some indigestion problems. But that is not occuring as much now.

[James]

I can relate - I had just about all side effects that were listed myself! I will just comment on the Neuropathy since that was the one that stuck out the most to me. It started pretty bad during my 3rd cycle and by the time my chemo was over, it was really cranking up with the pain! It was so bad that I couldnt even turn the front door key, shuffle papers or open a bottle of soda. For me, the pain in my fingers was much worse than my feet. The good news is, it started healing a few weeks after the last round - but it hit the peak of pain about a week AFTER my last round. It took about a month to get back to normal activities and several months to totally go away. Still today (almost a year out of chemo now) I occasionally have redness and pain - but I am used to it now!

Also, tiger stripes are on my back and thighs - up until about a month ago they were still VERY dark tiger stripes, but all of a sudden I notices that they are finally fading. Something is telling me some marking will always be there - but I am not worried about it.

Hope this helps! Hang in there and keep us posted..
James

[James]

P.S. A comment on hair growth as well. The hair on my head came back just about identical as before Chemo - at first it was a little lighter actually, but now its just as it was. The weird part is, I used to grow facial hair on the side of my face (below the cheek bone) like most guys do, but now, my facial hair only grows in the "gotee" spots (chin and upper lip). I thought that was interesting but being that I dont want ANY facial hair, it actually is better like this - less to shave!!!