Sensitive Bald Head

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  • CherylHutch
    CherylHutch Member Posts: 1,375

    Cheryl
    Here we grow our own aloe vera, I think everyone in Santa Cruz, has their own plants, I have indoor and outdoor ones for use on burns, etc...
    Winter Marie

    I know... I'm an idiot!
    I used to have all kinds of aloe vera plants growing in the apartment, Winter! They were great, especially since I was forever burning myself in the kitchen ... and they were easy plants to keep because, other than overwatering them, you couldn't kill them!! They thrived on abuse!

    Soooo, where are all my aloe vera plants?? I have no idea why I don't have them anymore and instead, seem to have big leafy green plants that are useless other than for nice greenery :)

    Ok... on my "to do" list... off to the nursery I must go and pick up some aloe vera plants.

    Besides... I actually saw the first Cherry Blossoms starting to come out on the trees, so Spring is DEFINITELY around the corner... and with spring comes all my good intentions of repotting and getting new indoor plants. Thanks for the tip/reminder... I now know which ones I need to get first :)

    Cheryl
  • taraHK
    taraHK Member Posts: 1,952 Member
    ??
    Hi Cheryl,

    I'm on Irinotecan and have lost all my hair (well, almost all -- bit of fuzz left).

    I definitely know what you mean about the tingleing (sp?) -- and not a pleasant kind of tingle.

    But I haven't had that kind of rash.

    But you mentioned you had a rash after your first Irinotecan. I get a "flush" on my face after every chemo. My chemo is on Friday morning, I get the flush on Saturday afternoon. Around my nose, cheeks, chin -- and it is really quite uncomfortable. The nurse says its due to the steroids (prechemo). Could it be that??

    Also, are you using anything different in terms of shampoo, bath/shower products.....

    I'm a strong believer in hydrocortisone --

    Good luck!

    Tara
  • kristasplace
    kristasplace Member Posts: 957 Member
    Cheryl...
    I didn't hear that you were doing chemo again. Sorry i've been so out of touch. What's going on with you?

    Hugs,
    Krista
  • CherylHutch
    CherylHutch Member Posts: 1,375
    taraHK said:

    ??
    Hi Cheryl,

    I'm on Irinotecan and have lost all my hair (well, almost all -- bit of fuzz left).

    I definitely know what you mean about the tingleing (sp?) -- and not a pleasant kind of tingle.

    But I haven't had that kind of rash.

    But you mentioned you had a rash after your first Irinotecan. I get a "flush" on my face after every chemo. My chemo is on Friday morning, I get the flush on Saturday afternoon. Around my nose, cheeks, chin -- and it is really quite uncomfortable. The nurse says its due to the steroids (prechemo). Could it be that??

    Also, are you using anything different in terms of shampoo, bath/shower products.....

    I'm a strong believer in hydrocortisone --

    Good luck!

    Tara

    Hey Tara!
    Yep... that scalp tingle/burn/sensitivity... kind of hard to describe but I think for those who have had it, they know what we are talking about. I first noticed the tingle/sensitivity during the first Irinotecan infusion... the one where I was sooo sick. I have to admit, I didn't pay any attention to it really because it seemed the least of my worries when I was so sick and getting so dehydrated. Then, the third week, my so called good week, I did notice some rash spots on my chin (sort of like little red pimples or allergy spots, although there was nothing in them... just itchy/sore to touch. There were only a couple, so almost not worth mentioning (which is probably why, with all my other complaints, I forgot to mention them to my Onc or my GP).

    Now, your nurse says it's due to stereoids (pre-chemo). Hmm... the only steroid med I'm on is the desamethasone which I take before chemo, but then for 24 hours after the chemo (evening/morning/evening) and now, on an as-needed basis if I get nausea if the Emmend wears off. Soooo, it's possible that the dex might be the problem if steroids can cause allergy-like reactions.... but I've used the dex for any other chemo I've ever been on and have never had a reaction to it in the past. It's an enigma!

    As for shampoo/bath/shower products/soap, laundry detergent, hand sanitizer, makeup remover tissues, etc. None of that has changed. I'm a creature of habit and use the same old/same old. Of course, the Irinotecan is a new chemo for *me* so it's quite possible that any one of any product I've always used might react with the chemo... or the chemo with the product. It's going to be one of those things we have to keep an eye on. If the Hydrocortisone 2.5% cream can keep the burning/itch under control, then I may just have to live with the rash (if we find out the Irinotecan is working and beating the kaka out of the nodules in my lungs. I'd much rather have a rash than growing tumours :)

    Thanks, Tara!

    Cheryl
  • CherylHutch
    CherylHutch Member Posts: 1,375

    Cheryl...
    I didn't hear that you were doing chemo again. Sorry i've been so out of touch. What's going on with you?

    Hugs,
    Krista

    Krista!!
    Hey girlfriend... I noticed I hadn't seen too many posts from you lately and have been keeping my fingers crossed that all is going well in your world and life is taking up all your time :) Fill me in on how things are going for you :)

    Yep... I'm back on the chemo wagon. The old... get a nice long break from chemo (my break lasted about 2 1/2 years which was great! I wasn't NED... I had 12 nodules in my lungs (spread all over both lungs), we had blasted the biggest one away with an RFA procedure and the other 11 towed the line and behaved themselves. They were very, very lazy (there are situations where lazy is a very good thing) and just hung out but didn't show any signs of growing... for 2 1/2 years. Last June they decided to spread their wings and try the growing thing... so that's when we went back on chemo. On Xeloda (pill form of 5FU) and for three months, they were taught a very good lesson. 33% shrinkage and the growth had stopped. But alas, Sept/10 - Dec/10 they started growing again, even while on Xeloda. Sooooo, quick 6 week break from all chemo so we could start with a clean slate... and I started the Irinotecan in Feb. 1st infusion was deadly... most everyone doesn't have too bad of a time on it, but I just had to be a Diva and get every side affect known to man and womankind and multiply it by 10 in strength :) Absolute worst 2 weeks of my life... have never been bedridden to the point I didn't have the energy or pain tolerance to get around the apartment every day (thank goodness for the best neighbours and friends in the world). The third week I finally started feeling normal (physically) but to add insult to injury, lost all the hair on my head in that third week. Just my head... still have my eyelashes and eyebrows (both lashes and brows are growing like wild weeds).

    Long and short... my onc says that suffering like I did for that first infusion is totally unacceptable and now that we know just how sensitive I am to the Irinotecan, she has changed my dose to half/dose every two weeks instead of every three weeks.... and has put me on the anti-side affect meds that I wasn't on before (Emmend, a shot of Atropin in my IV, Lomotil, the dexamethasone and the Ondesteron). Today was my second infusion of the half dose. Even with the anti-side affect meds, I felt a little queasy around 5pm... and a little crampy/spasmy as well. So, I took a dex, 2 Lomotil pills and then made a yummy Beef Dip on a Kaiser with au jus. Delicious (tasted great... didn't realize I must have been hungry) and it's always good to make sure you've eaten when you take a Dexamethasone.... so it's now just after 9pm PDT and everything seems to have calmed down (fingers crossed).

    I'm thinking it will probably take another infusion or two for us to get any decent indication if the Irinotecan is working and doing it's job... but if the way it made me sooooo sick on that first round is any indication just how strong it is, then I think it definitely is strong enough to do the job!! :D

    But funny how, all it takes is one bad experience of being sooooo sick, and it makes you leary about how you are going to be for every infusion afterwards. For all I know, that first infusion was a one time only experience and all the rest are going to be very manageable and the side affects under control... but I'm so paranoid of being so sick, I'm in no hurry to get out and about every day/night like my normal lifestyle is all about.

    Cheryl
  • kristasplace
    kristasplace Member Posts: 957 Member

    Krista!!
    Hey girlfriend... I noticed I hadn't seen too many posts from you lately and have been keeping my fingers crossed that all is going well in your world and life is taking up all your time :) Fill me in on how things are going for you :)

    Yep... I'm back on the chemo wagon. The old... get a nice long break from chemo (my break lasted about 2 1/2 years which was great! I wasn't NED... I had 12 nodules in my lungs (spread all over both lungs), we had blasted the biggest one away with an RFA procedure and the other 11 towed the line and behaved themselves. They were very, very lazy (there are situations where lazy is a very good thing) and just hung out but didn't show any signs of growing... for 2 1/2 years. Last June they decided to spread their wings and try the growing thing... so that's when we went back on chemo. On Xeloda (pill form of 5FU) and for three months, they were taught a very good lesson. 33% shrinkage and the growth had stopped. But alas, Sept/10 - Dec/10 they started growing again, even while on Xeloda. Sooooo, quick 6 week break from all chemo so we could start with a clean slate... and I started the Irinotecan in Feb. 1st infusion was deadly... most everyone doesn't have too bad of a time on it, but I just had to be a Diva and get every side affect known to man and womankind and multiply it by 10 in strength :) Absolute worst 2 weeks of my life... have never been bedridden to the point I didn't have the energy or pain tolerance to get around the apartment every day (thank goodness for the best neighbours and friends in the world). The third week I finally started feeling normal (physically) but to add insult to injury, lost all the hair on my head in that third week. Just my head... still have my eyelashes and eyebrows (both lashes and brows are growing like wild weeds).

    Long and short... my onc says that suffering like I did for that first infusion is totally unacceptable and now that we know just how sensitive I am to the Irinotecan, she has changed my dose to half/dose every two weeks instead of every three weeks.... and has put me on the anti-side affect meds that I wasn't on before (Emmend, a shot of Atropin in my IV, Lomotil, the dexamethasone and the Ondesteron). Today was my second infusion of the half dose. Even with the anti-side affect meds, I felt a little queasy around 5pm... and a little crampy/spasmy as well. So, I took a dex, 2 Lomotil pills and then made a yummy Beef Dip on a Kaiser with au jus. Delicious (tasted great... didn't realize I must have been hungry) and it's always good to make sure you've eaten when you take a Dexamethasone.... so it's now just after 9pm PDT and everything seems to have calmed down (fingers crossed).

    I'm thinking it will probably take another infusion or two for us to get any decent indication if the Irinotecan is working and doing it's job... but if the way it made me sooooo sick on that first round is any indication just how strong it is, then I think it definitely is strong enough to do the job!! :D

    But funny how, all it takes is one bad experience of being sooooo sick, and it makes you leary about how you are going to be for every infusion afterwards. For all I know, that first infusion was a one time only experience and all the rest are going to be very manageable and the side affects under control... but I'm so paranoid of being so sick, I'm in no hurry to get out and about every day/night like my normal lifestyle is all about.

    Cheryl

    Shoot, Cheryl...
    i can't believe what you're going through. I knew you were a stage IV, but i thought everything was entirely in-check for you. I'm so sorry you're on the chemo wagon again. I hope it will be a very short run. Oh, the sicknesses on chemo! Watch out for the placebo thing. I've heard stories about people who got side affect symptoms on the way to their infusions just because they were expecting the chemo would make them sick. Why can't we placebo the cancer away? Well, i've read stories about people who claim they've done that. They should bottle that up!

    I've been doing so fabulous, i feel guilty about posting about it. I miss reading the posts from everyone, but i have to admit that i got very depressed after Kimby died, and then downright miserable after Donna died, and i haven't been as active since. I realize that with the way my cancer has gone, i should be advocating more, and i do want to do that.

    I ended up getting spread to an ovary and both lungs. They took the ovary, and right after that, they found the tumor in the other lung. They were getting set to do surgery on the lung that had tumor growth, and sent me a month later to get a CT scan so they could get a better look at it. To their surprise, and mine, it was completely gone. Apparently the spot on the other lung disappeared, too, cuz both lungs are entirely clear, and have been for ten months now. I wish i could pinpoint exactly what i did, but i'm not sure if it was adding the vitamin D, or a combination of all the things i'm doing that did it.

    I hope you're enjoying your life the best you can, too. You're such a jovial person, i think if you keep smiling and laughing, you'll get through this. I'll be hoping that the ironitecan works. I know it's helped some people. Someone i know who's a ten year survivor used it, and he swears it's what kicked his cancer's a$$.

    Many hugs!
    Krista
  • CherylHutch
    CherylHutch Member Posts: 1,375

    Shoot, Cheryl...
    i can't believe what you're going through. I knew you were a stage IV, but i thought everything was entirely in-check for you. I'm so sorry you're on the chemo wagon again. I hope it will be a very short run. Oh, the sicknesses on chemo! Watch out for the placebo thing. I've heard stories about people who got side affect symptoms on the way to their infusions just because they were expecting the chemo would make them sick. Why can't we placebo the cancer away? Well, i've read stories about people who claim they've done that. They should bottle that up!

    I've been doing so fabulous, i feel guilty about posting about it. I miss reading the posts from everyone, but i have to admit that i got very depressed after Kimby died, and then downright miserable after Donna died, and i haven't been as active since. I realize that with the way my cancer has gone, i should be advocating more, and i do want to do that.

    I ended up getting spread to an ovary and both lungs. They took the ovary, and right after that, they found the tumor in the other lung. They were getting set to do surgery on the lung that had tumor growth, and sent me a month later to get a CT scan so they could get a better look at it. To their surprise, and mine, it was completely gone. Apparently the spot on the other lung disappeared, too, cuz both lungs are entirely clear, and have been for ten months now. I wish i could pinpoint exactly what i did, but i'm not sure if it was adding the vitamin D, or a combination of all the things i'm doing that did it.

    I hope you're enjoying your life the best you can, too. You're such a jovial person, i think if you keep smiling and laughing, you'll get through this. I'll be hoping that the ironitecan works. I know it's helped some people. Someone i know who's a ten year survivor used it, and he swears it's what kicked his cancer's a$$.

    Many hugs!
    Krista

    You ARE needed here, Krista!! :)
    For exactly those comments you have posted here. People need to hear that others have gone through the wringer, thought they were clear, only to find out the monster showed up in the lungs, or the liver or the ovary or wherever it felt like setting up camp. But even when it does that, there are stories of people like you where the new found tumours just magically disappeared. Who knows... maybe it was something you were taking doing that just happened to be the magic bullet for you. Maybe they misread a scan and it was scar tissue or lung infection that magically cleared up between scans. Then again, maybe it was a combination of medicine and attitude. No one knows the answer, nor do they know why it works for some and not for others. But I do think one of the keys IS to not let the cancer monster think it, in any way, has the upper hand, no matter how many times it may come back and smack us sideways :)

    Good thought about the "placebo" thing. When I went for my first infusion, I think I went there a little too cocky for my own good . My memory of my previous chemos was that I got through them pretty easily with very few problems (other than the neuropathy and nerve damage). So I just assumed that I'd sail through the Irinotecan... after all, most everyone has stated they haven't had too bad of a time on it. So if the majority have a fairly easy time then there's no reason to think I wouldn't (at least, minimal nausea and diarrhea symptoms). I was a tad bit concerned about the hair loss thing, but figured I had prepared myself pretty well psychologically... so I was ready. Wrong! I was hit sideways with a 2X4, and then smacked up the other side of the head for good measure :)

    NOW, the dose has been changed and the schedule has been changed so I'm doing waaaaaay better. Yes, there are still signs of the side affects but I get warnings now "Oops, is that a twinge of nausea or am I just hungry?" "Oops, I hear gurgling in my gut, that usually will be followed within a few hours of a bout of diarrhea if I don't do something about it". So plenty of time to take the meds and catch it before it goes anywhere. Still, having been so sick, when I feel even the slightest twinge of anything, I go into paranoia mode... so I'm very hesitant about making plans in advance. I just let friends know that they are to go ahead and make plans and on the day of said plans, if I'm feeling good, I'll join them... vs the old days I'd make plans with them in advance.

    But yes, I'm still enjoying life as good as ever! My "norm" has changed a little since I'm back on chemo. Like I say, I'm hesitant to make plans too far in advance... but have also changed a lot of my "commitments" to work I can do at home, rather than have to go to meetings, rehearsals, or hang out in the theatre office. Of course, on the good days, I can do any of that... I just happen to have it lucky that I can do a lot of the important stuff from home. Right now, I'm working on organizing the invites/RSVPs for 360 people for the opening night of "42nd STREET", the Broadway Musical, while getting the early publicity done for the May/June show, "Haunted by Eric Chappell" and then we will close our season with the American classic, "Harvey by Mary Chase". But first... I've got to get the media out to opening night as well, I'm doing a theatre alumni reunion night on that same opening night. Crazy times, I tell you!!

    Uh... opening night falls on a Chemo week... sooooo I'll be there come heck or high water... and will probably be sporting my lovely light brown with copper highlights wig and a party frock :D

    Cheryl
  • kristasplace
    kristasplace Member Posts: 957 Member

    You ARE needed here, Krista!! :)
    For exactly those comments you have posted here. People need to hear that others have gone through the wringer, thought they were clear, only to find out the monster showed up in the lungs, or the liver or the ovary or wherever it felt like setting up camp. But even when it does that, there are stories of people like you where the new found tumours just magically disappeared. Who knows... maybe it was something you were taking doing that just happened to be the magic bullet for you. Maybe they misread a scan and it was scar tissue or lung infection that magically cleared up between scans. Then again, maybe it was a combination of medicine and attitude. No one knows the answer, nor do they know why it works for some and not for others. But I do think one of the keys IS to not let the cancer monster think it, in any way, has the upper hand, no matter how many times it may come back and smack us sideways :)

    Good thought about the "placebo" thing. When I went for my first infusion, I think I went there a little too cocky for my own good . My memory of my previous chemos was that I got through them pretty easily with very few problems (other than the neuropathy and nerve damage). So I just assumed that I'd sail through the Irinotecan... after all, most everyone has stated they haven't had too bad of a time on it. So if the majority have a fairly easy time then there's no reason to think I wouldn't (at least, minimal nausea and diarrhea symptoms). I was a tad bit concerned about the hair loss thing, but figured I had prepared myself pretty well psychologically... so I was ready. Wrong! I was hit sideways with a 2X4, and then smacked up the other side of the head for good measure :)

    NOW, the dose has been changed and the schedule has been changed so I'm doing waaaaaay better. Yes, there are still signs of the side affects but I get warnings now "Oops, is that a twinge of nausea or am I just hungry?" "Oops, I hear gurgling in my gut, that usually will be followed within a few hours of a bout of diarrhea if I don't do something about it". So plenty of time to take the meds and catch it before it goes anywhere. Still, having been so sick, when I feel even the slightest twinge of anything, I go into paranoia mode... so I'm very hesitant about making plans in advance. I just let friends know that they are to go ahead and make plans and on the day of said plans, if I'm feeling good, I'll join them... vs the old days I'd make plans with them in advance.

    But yes, I'm still enjoying life as good as ever! My "norm" has changed a little since I'm back on chemo. Like I say, I'm hesitant to make plans too far in advance... but have also changed a lot of my "commitments" to work I can do at home, rather than have to go to meetings, rehearsals, or hang out in the theatre office. Of course, on the good days, I can do any of that... I just happen to have it lucky that I can do a lot of the important stuff from home. Right now, I'm working on organizing the invites/RSVPs for 360 people for the opening night of "42nd STREET", the Broadway Musical, while getting the early publicity done for the May/June show, "Haunted by Eric Chappell" and then we will close our season with the American classic, "Harvey by Mary Chase". But first... I've got to get the media out to opening night as well, I'm doing a theatre alumni reunion night on that same opening night. Crazy times, I tell you!!

    Uh... opening night falls on a Chemo week... sooooo I'll be there come heck or high water... and will probably be sporting my lovely light brown with copper highlights wig and a party frock :D

    Cheryl

    Thank you, Cheryl
    You're such a sweetie!

    I just love how you're involved with the theatre. I used to love acting when i was a child, and did a lot of junior theatre plays at the local college here. Buddy Ashbrook was the director for many of those plays, and both of his kids grew up to be movie and TV show celebrities. I miss those days!

    I think you look adorable in your little black hat. Some people pull off bald beautifully, and you're one of them! You look healthy and happy, and i have no doubt that is going to double your chances for beating this, yet again. You're so right that it can rear it's ugly head at any moment, be it next week, or five years from now. We're all in a very precarious situation. The thought crosses my mind every time i go in to get my results from a scan, but i don't worry about them like i used to. If it comes back, i'll deal with it then. As far as i'm concerned right now, it's gone, and i'm going to live like it's gone, and never coming back!

    I'll be keeping my eye out for your posts regarding the ironitecan results. I just know it's going to work for you, so i'll be expecting your next scans to be clear, if not at least significantly improved.

    Many hugs!
    Krista
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    scalp burining and hair loss
    On FOLFOX I'd feel like my head was sunburned for a few days, and then I'd start losing handfulls of hair.

    On FOLFIRI and Avastin, the same happened, only with even more hair loss.

    Now on maintenance of just 5-FU and Irinotecan, my scalp is still very sensitive. My hair was growing back - in the last couple months I have grown almost 1/2 an inch of hair. It doesn't seem to be falling out right now, but tonight, hooked up to my 5-FU, my scalp hurts- like a sunburn.

    Not sure what to say. I hope the lotion helps you.
  • CherylHutch
    CherylHutch Member Posts: 1,375

    scalp burining and hair loss
    On FOLFOX I'd feel like my head was sunburned for a few days, and then I'd start losing handfulls of hair.

    On FOLFIRI and Avastin, the same happened, only with even more hair loss.

    Now on maintenance of just 5-FU and Irinotecan, my scalp is still very sensitive. My hair was growing back - in the last couple months I have grown almost 1/2 an inch of hair. It doesn't seem to be falling out right now, but tonight, hooked up to my 5-FU, my scalp hurts- like a sunburn.

    Not sure what to say. I hope the lotion helps you.

    Scalp burning seems to be finished
    Hi Kathryn... thanks for chiming in :)

    Well, it seems the Hydro-cortozone 2.5% cream did the trick. I was going to report back on the weekend to say the burning and itching had stopped, but the rash was still there. But I noticed tonight the rash is pretty much all gone and there's no burning/itching. Something obviously caused it... whether it was a reaction to the Irinotecan (only chemo I'm on), or any one of the anti-side affects drugs. Hard to say. It also seemed both times, the rash showed up in the second week of treatment, so we shall see what next week brings. I'm in Week 1 of the third treatment. Mind you, I so far haven't had any side affects at all this week, other than some chemo fatigue. Heck, I even when out to a performance at the University, about 30 minutes away, with some friends tonight... and did just fine. I wore my lovely wig tonight and it was a hoot to see so many people there that I knew (it was an opening night) and so many of them didn't recognize me at first! I could blend into the crowd and no one knew... but then the double take they took when they realized it was me .

    Anywho... I'm pleased that the rash is gone... but definitely, when my hair was falling out, it was a burning tingling feeling and then the hair came out by the handfuls. Odd little thing that is, isn't it?

    Cheryl