Ladies going through chemo - how are you doing? Or those just starting or curious
Hi ladies! I know Teddi Bear, Editgirl and I are in active treatment. I thought it would be good to check in, see how you all are doing, share ideas, information etc.
i am in a clinical trial consisting of Aldoxorubicin and Gemzar infusion on day 1, gemzar on day 8, neulasta shot on day 9 and start all over again on Day 22 (reset to day 1.). I have been pretty beat for about four days post treatment and rebound in time for the next one. In my case I am having issues with platelet counts, hemoglobin to on my off weeks I am getting transfusions to boost my marrow production. They are seeing some of this with other trial participants and able to manage it. My doctors also noted that given I have been in continuous treatment now since April 2013 it also makes sense that my bone marrow production needs some "help".
I have few days where I wake up feeling energetic and well rested but when I do - watch out world! those are the days where I go for a gentle horseback ride, run errands, see friends for lunch.
How are you all? Sending hugs, keeping you in my prayers - Anne
Comments
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chemo impacts so far
Anne, First... Thanks for starting this. I think it will be a great help.
My GYN/ONC suggested 6 rounds of Taxol/Carbol and then radiation.
My local ONC suggested smaller doses weekly. So far, I have had two weekly treatments. The first one was relatively easy the live with. The second one, not so much.
He said I could have a cumulative effect and that certainly was the case. Not sure what the next step up will bring.
I had a 36 hour window of what we probably all call rough. Heavy fatigue and stomach "aches". I did not have constipation or diarrhea, but my stomach felt like it does when a person gets diarrhea. And painful gas after I ate. Slight muscle aches in my left leg off and on. This all hit mid-afternoon on day 2 post my chemo day.
This is day 5 post chemo and my stomach still doesn't feel good. But, it isn't so bad that I can't function. I did finally take an anti-nausea pill today to see if it would help, and it did a bit. So, I think I made a mistake thinking I didn't have nausea. I'll admit, I have not been sick in years, so I'm learning what symptoms really mean. I am not fatigued today but my energy level is not high either. However, I am pushing myself to do stuff. I don't think laying around all day is healthy.
I would love feedback from anyone out there doing weekly treatments. And, those doing the standard 6 too. Because I may ask to switch over to the standard if it will buy me more good days. Not sure yet. Also, I may be forced to switch over if my blood counts don't rebound.
Anne, I hope you find many more good days during this trial. I think about you all the time. Glad to see your posts today.
EditGirl, I have also been thinking about you and how you did with your first treatment.
Love to all,
Cindi
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Day 4 after first treatment
Thanks for starting this thread, Anne. It will be good to track everyone's progress and experiences.
On Friday I had the first of 6 carboplatin/taxol treatments scheduled every 3 weeks. I made an effort starting two days before chemo to really hydrate myself and get lots of protein in my diet for those pre days. Had Decadron and Zofran pills prior to chemo and Zofran for 48 hours post. I also have a prescription for Compazine but have not needed it. Saturday and Sunday I felt pretty good, except for feeling constipated and a bit tired Sunday night. Didn't sleep well Sunday night with stomach pains. I have found walking helps, much like we do with horses that are colicking, so I did laps around my house at 2:30 in the morning. Those continued yesterday most of the day along with just generally feeling kind of crummy. Still no nausea. Stomach pains went away as long as I had something in my stomach, so I was snacking all day long when I wasn't napping. Constipation finally resolved itself. I am now drinking tons of prune and apple juice, enjoying my fruit, and continuing with colace. Hope that heads off any more of that! This morning I feel pretty good. Stomach pains are way better today, just some twinges in my abdomen, but I am going to try to keep my tummy full anyway.
I have read that days 4 and 5 post chemo could be the worst days, so I am cautiously optimistic based on how I'm feeling at the moment.
Hoping we all have more good days than bad during treatment!
Chris
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Active chemo
I am currently on active chemo. I receive Doxil every four weeks. Usually I have 2 weeks with days that I feel crummy and two weeks that I feel pretty good. I have hand and foot syndrome from the Doxil and Neuropathy left over from the Taxol I was on before. I am lucky that is only mild and usually only bothers me at night when my feet burn. Fatigue sets in on about day 4 and goes away at the end of the two weeks. During those first two weeks I have a variety of digestive issues, from acid reflux to constpation and diahrea.. This time around,I had a lotmore easy days until this weekend when everything went south.. Today i spent getting Hydrated, hoping that works, havent been able to eat or drink.
After 7 Doxil treatments I seem to be stable, more shrinking than growing. i will have a new CT scan next week to see if that remains true.
I do have many more good days than bad. The quality of life is still good. I have learnd much from this experience and I have been blessed with great doctors who care, a wondeful loving husband and caring family and friends.
Hugs and prayers, Lou Ann
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Weekly Chemo #3 Done! 15 to go...Lou Ann M said:Active chemo
I am currently on active chemo. I receive Doxil every four weeks. Usually I have 2 weeks with days that I feel crummy and two weeks that I feel pretty good. I have hand and foot syndrome from the Doxil and Neuropathy left over from the Taxol I was on before. I am lucky that is only mild and usually only bothers me at night when my feet burn. Fatigue sets in on about day 4 and goes away at the end of the two weeks. During those first two weeks I have a variety of digestive issues, from acid reflux to constpation and diahrea.. This time around,I had a lotmore easy days until this weekend when everything went south.. Today i spent getting Hydrated, hoping that works, havent been able to eat or drink.
After 7 Doxil treatments I seem to be stable, more shrinking than growing. i will have a new CT scan next week to see if that remains true.
I do have many more good days than bad. The quality of life is still good. I have learnd much from this experience and I have been blessed with great doctors who care, a wondeful loving husband and caring family and friends.
Hugs and prayers, Lou Ann
I finally had a decent day for energy yesterday and a mostly normal stomach. Just in time to do it again!
Just got home from treatment. Stopped at Wendys for a Frostie as my reward. :-)
Didn't sleep well last night so managed to sleep for about half my time in the chair today. The rest of the time was spent eating off and on. I find that I mostly can't eat normal size meals any longer. I do eat about the same amount spread over an entire day. Only lost 1/2 pound so holding good on my weight. My blood counts dropped a bit more but still in a good range to continue weekly treatments.
Here's hoping for an extended amount of days before the crappy days hit!
Take Care,
Cindi
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Thinking of you allTeddyandBears_Mom said:Weekly Chemo #3 Done! 15 to go...
I finally had a decent day for energy yesterday and a mostly normal stomach. Just in time to do it again!
Just got home from treatment. Stopped at Wendys for a Frostie as my reward. :-)
Didn't sleep well last night so managed to sleep for about half my time in the chair today. The rest of the time was spent eating off and on. I find that I mostly can't eat normal size meals any longer. I do eat about the same amount spread over an entire day. Only lost 1/2 pound so holding good on my weight. My blood counts dropped a bit more but still in a good range to continue weekly treatments.
Here's hoping for an extended amount of days before the crappy days hit!
Take Care,
Cindi
as you trudge through your treatments. I did not have chemo for endo cancer (it was Type I), but I had it for breast cancer. All I can say is arghhhhh, your side effects are all too familiar.
My best to all of you,
Suzanne
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Post 4th chemo,TeddyandBears_Mom said:Weekly Chemo #3 Done! 15 to go...
I finally had a decent day for energy yesterday and a mostly normal stomach. Just in time to do it again!
Just got home from treatment. Stopped at Wendys for a Frostie as my reward. :-)
Didn't sleep well last night so managed to sleep for about half my time in the chair today. The rest of the time was spent eating off and on. I find that I mostly can't eat normal size meals any longer. I do eat about the same amount spread over an entire day. Only lost 1/2 pound so holding good on my weight. My blood counts dropped a bit more but still in a good range to continue weekly treatments.
Here's hoping for an extended amount of days before the crappy days hit!
Take Care,
Cindi
Have 2 more from total of 6 Carbo/Taxol.
Diagnosed in April this year. Had surgery in May.
Endometrial Adenocarcinoma Stage 4, grade 3 or 2.
My first chemo was the worst so far, the second was better and my Onco doctor told me, that the rest will be fine,not worse.
Side efects start on the second evening after treatment. Bone pain between knees and ankles mostly for 3-4 days, so I'm taking Tylenol every 4-6 hours.
The nausea I manage somehow. I don't have apetite, so I don't eat much.
When my legs get better start headache, insomnia and restless legs syndrom. The headache gets worse with each treatment.
After the 3th chemo the carrot juice helped me, but not after the 4th,
so I'm taking strong pill for the headache.
For week or 10 days after chemo I'm exremely tired. Some days I stay in bed, but most of the time I'm trying to be active.
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EatingCucu me said:Post 4th chemo,
Have 2 more from total of 6 Carbo/Taxol.
Diagnosed in April this year. Had surgery in May.
Endometrial Adenocarcinoma Stage 4, grade 3 or 2.
My first chemo was the worst so far, the second was better and my Onco doctor told me, that the rest will be fine,not worse.
Side efects start on the second evening after treatment. Bone pain between knees and ankles mostly for 3-4 days, so I'm taking Tylenol every 4-6 hours.
The nausea I manage somehow. I don't have apetite, so I don't eat much.
When my legs get better start headache, insomnia and restless legs syndrom. The headache gets worse with each treatment.
After the 3th chemo the carrot juice helped me, but not after the 4th,
so I'm taking strong pill for the headache.
For week or 10 days after chemo I'm exremely tired. Some days I stay in bed, but most of the time I'm trying to be active.
LouAnne and Cuculigata,
One of the foods that works best for me is watermelon. Awk clued me in on that little tip a while ago. I eat it everyday. It tastes good even when I feel my worst.
I am finding myself wanting fruits and vegetables more than anything else. Very strange because before I ate it for health, not because it was my first choice for taste. My best dinner is baked potato, green beans, black eyed peas and a small amount of baked chicken.
My favorite foods were ice cream, cake, cookies and candy. All eaten in moderation of course. But still... Now, sugar is not appealing. I look at this junk and want it; but my stomach hurls at the thought!
LouAnne - One night I didn't feel like cooking and my husband got pizza. I remembered your post about how that worked for you. It didn't make me feel sick but it didn't taste good. Funny how we all react differently to the foods. :-)
All,
I find myself having a very hard time sleeping at night. Since I have night sweats, I thought maybe that was it. But, before I would wake up 2-3 times per night. Now, I am only getting 2-3 hours of sleep. Are any of you experiencing this due to chemo? I have not let myself sleep much during the day to see if that helps. But, so far it hasn't helped.
Input please.
Thanks,
Cindi
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Hi Cindi!TeddyandBears_Mom said:Eating
LouAnne and Cuculigata,
One of the foods that works best for me is watermelon. Awk clued me in on that little tip a while ago. I eat it everyday. It tastes good even when I feel my worst.
I am finding myself wanting fruits and vegetables more than anything else. Very strange because before I ate it for health, not because it was my first choice for taste. My best dinner is baked potato, green beans, black eyed peas and a small amount of baked chicken.
My favorite foods were ice cream, cake, cookies and candy. All eaten in moderation of course. But still... Now, sugar is not appealing. I look at this junk and want it; but my stomach hurls at the thought!
LouAnne - One night I didn't feel like cooking and my husband got pizza. I remembered your post about how that worked for you. It didn't make me feel sick but it didn't taste good. Funny how we all react differently to the foods. :-)
All,
I find myself having a very hard time sleeping at night. Since I have night sweats, I thought maybe that was it. But, before I would wake up 2-3 times per night. Now, I am only getting 2-3 hours of sleep. Are any of you experiencing this due to chemo? I have not let myself sleep much during the day to see if that helps. But, so far it hasn't helped.
Input please.
Thanks,
Cindi
Your food changes are very similar to mine. I started this journey, and continue it - as a very healthy person except for the cancer of course! Decent diet but I also enjoyed my sweets - my weight was fine, not thin but okay. On frontline chemo the thought of something sweet was nauseating. I am still the same way now except for the occasional ice cream which seems to help with my constipation. My taste has evolved to savory things and I crave apples, arugula and eat a lot of chicken. Plus baked potatoes are the most constant.
Sleep is an issue for me. i used to really stress over it. One of the things that I have heard consistently is sleep when you can, don't push yourself during the daytime but take naps if you are tired. A few of my doctors recommended taking a benedryl for sleep at night which I would do if I needed to, then they prescribed a light dose of Attivan which I take only as needed. I also have a cup of chamomile, mint and ginger tea before I go to bed which really helps.
Some nights I get up, take my tea and sit outside looking at the stars and enjoying the quiet stillness. I think about my space in this world and find it to be very peaceful for me. My dogs usually accompany me. Those are moments I find to be special and worthwhile.
sending hugs.
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I have sleeplessness for a decade or moreTeddyandBears_Mom said:Eating
LouAnne and Cuculigata,
One of the foods that works best for me is watermelon. Awk clued me in on that little tip a while ago. I eat it everyday. It tastes good even when I feel my worst.
I am finding myself wanting fruits and vegetables more than anything else. Very strange because before I ate it for health, not because it was my first choice for taste. My best dinner is baked potato, green beans, black eyed peas and a small amount of baked chicken.
My favorite foods were ice cream, cake, cookies and candy. All eaten in moderation of course. But still... Now, sugar is not appealing. I look at this junk and want it; but my stomach hurls at the thought!
LouAnne - One night I didn't feel like cooking and my husband got pizza. I remembered your post about how that worked for you. It didn't make me feel sick but it didn't taste good. Funny how we all react differently to the foods. :-)
All,
I find myself having a very hard time sleeping at night. Since I have night sweats, I thought maybe that was it. But, before I would wake up 2-3 times per night. Now, I am only getting 2-3 hours of sleep. Are any of you experiencing this due to chemo? I have not let myself sleep much during the day to see if that helps. But, so far it hasn't helped.
Input please.
Thanks,
Cindi
Recently I try The breathing 4-7-8( find it in internet),reading, walking, eating or if anything Lorazepam.
Food taste: mine changed too. In my bad days I'm craving salty junk food and in my normal days - everything, but less sweet than ever.
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4-7-8Cucu me said:I have sleeplessness for a decade or more
Recently I try The breathing 4-7-8( find it in internet),reading, walking, eating or if anything Lorazepam.
Food taste: mine changed too. In my bad days I'm craving salty junk food and in my normal days - everything, but less sweet than ever.
I tried that also, but it made me anxious and I couldn't sleep at all! But, my daughter says it works for her. I do find reading before bed helps. Sandy
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SleepingTeddyandBears_Mom said:Eating
LouAnne and Cuculigata,
One of the foods that works best for me is watermelon. Awk clued me in on that little tip a while ago. I eat it everyday. It tastes good even when I feel my worst.
I am finding myself wanting fruits and vegetables more than anything else. Very strange because before I ate it for health, not because it was my first choice for taste. My best dinner is baked potato, green beans, black eyed peas and a small amount of baked chicken.
My favorite foods were ice cream, cake, cookies and candy. All eaten in moderation of course. But still... Now, sugar is not appealing. I look at this junk and want it; but my stomach hurls at the thought!
LouAnne - One night I didn't feel like cooking and my husband got pizza. I remembered your post about how that worked for you. It didn't make me feel sick but it didn't taste good. Funny how we all react differently to the foods. :-)
All,
I find myself having a very hard time sleeping at night. Since I have night sweats, I thought maybe that was it. But, before I would wake up 2-3 times per night. Now, I am only getting 2-3 hours of sleep. Are any of you experiencing this due to chemo? I have not let myself sleep much during the day to see if that helps. But, so far it hasn't helped.
Input please.
Thanks,
Cindi
I am that rare bird who seldom has trouble falling asleep. So far, the chemo has made only a little difference. I am still able to sleep at least 5 or 6 hours straight and sometimes a little more. A friend told me about 4-7-8 and I have tried it. I find it relaxing, but I'm not sure it makes any difference. On nights when I do have trouble falling asleep, I use a variation of counting sheep where I concentrate only on counting slowly and visualizing only the numbers (no sheep!). Sounds weird, I know, but it usually works for me.
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I forgot to mentionEditgrl said:Sleeping
I am that rare bird who seldom has trouble falling asleep. So far, the chemo has made only a little difference. I am still able to sleep at least 5 or 6 hours straight and sometimes a little more. A friend told me about 4-7-8 and I have tried it. I find it relaxing, but I'm not sure it makes any difference. On nights when I do have trouble falling asleep, I use a variation of counting sheep where I concentrate only on counting slowly and visualizing only the numbers (no sheep!). Sounds weird, I know, but it usually works for me.
some relaxing tea from the grocery store before going to bed. Worked for me before.
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Sleep InputCucu me said:I forgot to mention
some relaxing tea from the grocery store before going to bed. Worked for me before.
Thanks all for the feedback. Lots of great suggestions to try.
Just got back from my 6 week post hysto surgery check up. All looks good. Physical restrictions lifted. Yippee!
Now, if all goes like last week... I may have just enough time to vaccum before the fatigue sets in tomorrow afternoon. :-)
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weekly chemo #3 ImpactsTeddyandBears_Mom said:Sleep Input
Thanks all for the feedback. Lots of great suggestions to try.
Just got back from my 6 week post hysto surgery check up. All looks good. Physical restrictions lifted. Yippee!
Now, if all goes like last week... I may have just enough time to vaccum before the fatigue sets in tomorrow afternoon. :-)
This time was not as bad as # 2. I'm on my worst day today (if all goes like the first two).
Lower energy hit around 11 on day 2 post chemo day. And, I had some stomach cramps but not nearly as severe as last week.
Heavier fatigue hit today (day 3), still some stomach cramps but nothing major, some nausea (took a pill), some minor aches and a low grade headache. Mostly sleeping or laying on the couch. I don't have a lot of energy to do much else. No appetite today. But eating a little and drinking lots of fluids.
This cycle was easier to live with for sure.
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I hopeTeddyandBears_Mom said:weekly chemo #3 Impacts
This time was not as bad as # 2. I'm on my worst day today (if all goes like the first two).
Lower energy hit around 11 on day 2 post chemo day. And, I had some stomach cramps but not nearly as severe as last week.
Heavier fatigue hit today (day 3), still some stomach cramps but nothing major, some nausea (took a pill), some minor aches and a low grade headache. Mostly sleeping or laying on the couch. I don't have a lot of energy to do much else. No appetite today. But eating a little and drinking lots of fluids.
This cycle was easier to live with for sure.
the rest you have won't get worse.
Talking from experience and from what my oncologist and naturopatist told me.
Thumps up!
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Hair Loss ProcessCucu me said:I hope
the rest you have won't get worse.
Talking from experience and from what my oncologist and naturopatist told me.
Thumps up!
So, I'm finding it easier to say I will be bald than actually taking action to make it happen.
I have fine, thin, straight hair. And, the fallout started about 4 days ago at a fairly rapid rate. I don't have bald spots yet but I'm not far from that point. And, dealing with the falling hair is on my last nerve. I have been pulling it back to contain it as much as possible. But, my scalp is bothered by the tension. Did any of you get something similar to "sore spots" ? Not really painful, just sensitive.
I took a giant step today by pulling it into a ponytail and whacking it off. Decided I would be the one to make it ugly before the chemo does it. Next step will be to have my husband shave it. I'm still working on myself for that step!
Here's a question: How long after any of you started losing your hair did you have to shave it?
I hope you are all having a nice holiday weekend.
Cindi
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Bald is beautiful!TeddyandBears_Mom said:Hair Loss Process
So, I'm finding it easier to say I will be bald than actually taking action to make it happen.
I have fine, thin, straight hair. And, the fallout started about 4 days ago at a fairly rapid rate. I don't have bald spots yet but I'm not far from that point. And, dealing with the falling hair is on my last nerve. I have been pulling it back to contain it as much as possible. But, my scalp is bothered by the tension. Did any of you get something similar to "sore spots" ? Not really painful, just sensitive.
I took a giant step today by pulling it into a ponytail and whacking it off. Decided I would be the one to make it ugly before the chemo does it. Next step will be to have my husband shave it. I'm still working on myself for that step!
Here's a question: How long after any of you started losing your hair did you have to shave it?
I hope you are all having a nice holiday weekend.
Cindi
I had pain in my scalp, especially on my pillow at night. I was told this is the follicles effectively dying in your scalp. originally my hair came out very gently, no clumps. About a week later it started in clumps and I shaved it pretty quickly right after. This time around it was again coming out just leaving a fine layer on my pillow and in my hands. I had the scalp pain again. My stylist cut it into a pixie about two weeks ago and while I am losing some no clumps and no patches. When that starts I will shave it all off again Although there is a chance that my hair will stay thinner like it is. I had very thick, wavy hair before I started my chemo journey, it started to grow back in about a month after I finished frontline and came in extra thi k and very curly. I didn't lose any during Doxil nor Avastin. The great thing is losing your body hair! I haven't shaved my underamrs in two weeks and about the same for my legs. The tough part for me was losing my eyebrows and eyelashes which is happening this time around.
Sending hugs! Anne
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HairAWK said:Bald is beautiful!
I had pain in my scalp, especially on my pillow at night. I was told this is the follicles effectively dying in your scalp. originally my hair came out very gently, no clumps. About a week later it started in clumps and I shaved it pretty quickly right after. This time around it was again coming out just leaving a fine layer on my pillow and in my hands. I had the scalp pain again. My stylist cut it into a pixie about two weeks ago and while I am losing some no clumps and no patches. When that starts I will shave it all off again Although there is a chance that my hair will stay thinner like it is. I had very thick, wavy hair before I started my chemo journey, it started to grow back in about a month after I finished frontline and came in extra thi k and very curly. I didn't lose any during Doxil nor Avastin. The great thing is losing your body hair! I haven't shaved my underamrs in two weeks and about the same for my legs. The tough part for me was losing my eyebrows and eyelashes which is happening this time around.
Sending hugs! Anne
I never shaved mine. The women who fitted me for a wig told me not to but I've forgotten why. Luckily my scalp wasn't sensitive. My hair was short so I just combed it several times a day and that kept things from getting messy- kinda like grooming your dog when it's shedding. Like AWK I minded losing my lashes and brows the most. my wig looked better than my own hair. Oddly enough, I found very short hair is flattering to me and I still wear it that way. Without chemo I would never have know. There's a silver lining to everything.
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thanks!ConnieSW said:Hair
I never shaved mine. The women who fitted me for a wig told me not to but I've forgotten why. Luckily my scalp wasn't sensitive. My hair was short so I just combed it several times a day and that kept things from getting messy- kinda like grooming your dog when it's shedding. Like AWK I minded losing my lashes and brows the most. my wig looked better than my own hair. Oddly enough, I found very short hair is flattering to me and I still wear it that way. Without chemo I would never have know. There's a silver lining to everything.
Thanks Anne and Connie for the replies.
I gave myself the gift of lazor hair removal years ago. So, I just have a few stragglers here and there on my legs and underarms. :-)
Now, if it would get rid of the darn chin hairs, GREAT!
I still have my eyebrows. But, my eyelashes are getting thin. It is an adventure finding them to put mascara on. I agree, I think losing the eyebrows and lashes will be harder. Makeup will be a must!
I put one of my head wraps on this evening to keep my hair from falling into my food while cooking dinner. Plus, it gave me a chance to think about the after hair look. Just another milestone to get me closer to the end of this chemo journey. Not sure about a wig, Connie. Living in Florida with the humidity may be a bit much. Especially adding hot flashes into the mix. I have this visual of being in a store, having a hot flash and ripping it off my head! lol
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WigTeddyandBears_Mom said:thanks!
Thanks Anne and Connie for the replies.
I gave myself the gift of lazor hair removal years ago. So, I just have a few stragglers here and there on my legs and underarms. :-)
Now, if it would get rid of the darn chin hairs, GREAT!
I still have my eyebrows. But, my eyelashes are getting thin. It is an adventure finding them to put mascara on. I agree, I think losing the eyebrows and lashes will be harder. Makeup will be a must!
I put one of my head wraps on this evening to keep my hair from falling into my food while cooking dinner. Plus, it gave me a chance to think about the after hair look. Just another milestone to get me closer to the end of this chemo journey. Not sure about a wig, Connie. Living in Florida with the humidity may be a bit much. Especially adding hot flashes into the mix. I have this visual of being in a store, having a hot flash and ripping it off my head! lol
Yep, don't think I could manage that in Florida during the summer. I managed to hang onto my eyebrows till till the 4 th chemo. Never fear, the chin hairs will go....then return. I tried lazer for them but they always return. Darn stubborn.
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