Ladies going through chemo - how are you doing? Or those just starting or curious
Comments
-
hair lossConnieSW said:Wig
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.
I was recently diagnosed with UPSC stage 1B and will begin chemo in 3-4 weeks with taxol and cisto every 21 days. How soon after treatment begins will hair loss occur? Has anyone continued to work during treatment.I need to work to maintain my insurance. Does everyone have a port? When is it placed in office or under anesthesia? I appreciate your response.I have so many guestions.I feel blessed I found this site.
0 -
hair lossmary8237 said:hair loss
I was recently diagnosed with UPSC stage 1B and will begin chemo in 3-4 weeks with taxol and cisto every 21 days. How soon after treatment begins will hair loss occur? Has anyone continued to work during treatment.I need to work to maintain my insurance. Does everyone have a port? When is it placed in office or under anesthesia? I appreciate your response.I have so many guestions.I feel blessed I found this site.
Hi Mary. I started having scalp pain right before my 2nd chemo (just finished #4 last week). I had already cut my waist length hair super short. When the pain started, my husband buzzed my hair and the pain went away.
I have not worked since my surgery in April. My doc says many people do work during chemo, but my chemo hang-overs have been so rough I don't understand how. I do understand the financial need to work. My medical bills (despite insurance) are pilling up. In a month or so, I hope to return to working at a job I retired from 2 years ago to get those bills paid.
I understand having lots of questions. When I would ask my doc these types of questions, all I ever got was "well usually......". Not much help when you are in a black hole in need of a life line. The folks here have been a great help and comfort for me. Lots of good info and resources.
0 -
Marymary8237 said:hair loss
I was recently diagnosed with UPSC stage 1B and will begin chemo in 3-4 weeks with taxol and cisto every 21 days. How soon after treatment begins will hair loss occur? Has anyone continued to work during treatment.I need to work to maintain my insurance. Does everyone have a port? When is it placed in office or under anesthesia? I appreciate your response.I have so many guestions.I feel blessed I found this site.
Hi Mary, Sorry you have to join this cancer journey with us. But, you have come to the right place for support and answers.
I am the only one that I know of that is on weekly treatments rather than the every 3 week timeline. Still on the fence which way is better. At this point I'm leaning towards the every 3 weeks because it seems like there is a longer "better days" window between treatments.
My hair started falling out at day 16 post my first treatment. Tomorrow will be day 21 and is my next treatment. I will be taking that next step today to go bald.
I have a port. I did have post surgery pain that took about 2 or so weeks to resolve. However, after watching other patients without a port getting stuck many times to find a good vein, I know I made the right decision to get one. It was placed in the hospital under anesthesia.
You can do this Mary. Not going to lie, it isn't easy but it is doable. Lots of ladies on this site continued to work during treatment. I was lucky to have retired January of this year. So, I can't give you first hand experience on working during treatment.
Ask any questions. Someone will have the experience to answer you.
Cindi
1 -
Hi Mary - there are a couple of things you should check intomary8237 said:hair loss
I was recently diagnosed with UPSC stage 1B and will begin chemo in 3-4 weeks with taxol and cisto every 21 days. How soon after treatment begins will hair loss occur? Has anyone continued to work during treatment.I need to work to maintain my insurance. Does everyone have a port? When is it placed in office or under anesthesia? I appreciate your response.I have so many guestions.I feel blessed I found this site.
I took a short term disability leave during frontline (first type) chemo, returned to work and worked through 19 months of other treatments which took place every three weeks. if your company has an HR deptment you should speak with them. You can take FMLA leave which will protect your job while you are out for up twelve weeks. My company provides full pay for that same period through a combination of short term disability from the state and company offset. All of my benefits remain intact. The other thing that I was urged to do was register as a Disabled individual under the ADA act. This benefits both you and your company if it is of a certain size. In my case I was allowed to work from home after treatments which was a huge help. Confidentiality is attached to this although I ended up telling people I was still going through treatment. I work with a team and my team needed to understand how to reach me etc. it worked out well.
The most important thing is to be gentle with yourself. You can do this no matter what. Hugs - Anne
0 -
Hi, Marymary8237 said:hair loss
I was recently diagnosed with UPSC stage 1B and will begin chemo in 3-4 weeks with taxol and cisto every 21 days. How soon after treatment begins will hair loss occur? Has anyone continued to work during treatment.I need to work to maintain my insurance. Does everyone have a port? When is it placed in office or under anesthesia? I appreciate your response.I have so many guestions.I feel blessed I found this site.
I had a port put in under "conscious sedation" but I'm not sure what was all that conscious about it. I was out. I believe it's what used to be called twilight sleep and what is generally used for those undergoing colonoscopies as well. The procedure was easy. There was some pain after but I didn't even need to take ibuprofen for it. I did have to use my hand and arm on a limited basis for a few days, though. It does make the chemo much easier. I did not want to risk the damage to soft tissue that Taxol can sometimes cause.
As far as working, everyone has a different tolerance for the chemo and the side effects. I have only had one treatment, and my side effects have been minimal so far. However, I am self-employed, work at a sedentary job, and can pretty much set my own schedule.
If you plan to get a wig, I would suggest doing that while you still have hair, do it with a friend, or more!, and have fun. I am so glad that I did it that way. We had a blast trying on different styles and colors. But it was also an empowering act for me and my friend, and a way of taking control of a situation I have no control over. My hair has not yet started to go, but I am only 12 days past my first chemo. I'm guessing mine will start to go this weekend. Probably won't wear the wig all the time, but I am glad that I have that option.
Ask away with the questions. Someone here will be able to help. The journey is a lot less scary with these ladies.
Chris
0 -
myexperienceEditgrl said:Hi, Mary
I had a port put in under "conscious sedation" but I'm not sure what was all that conscious about it. I was out. I believe it's what used to be called twilight sleep and what is generally used for those undergoing colonoscopies as well. The procedure was easy. There was some pain after but I didn't even need to take ibuprofen for it. I did have to use my hand and arm on a limited basis for a few days, though. It does make the chemo much easier. I did not want to risk the damage to soft tissue that Taxol can sometimes cause.
As far as working, everyone has a different tolerance for the chemo and the side effects. I have only had one treatment, and my side effects have been minimal so far. However, I am self-employed, work at a sedentary job, and can pretty much set my own schedule.
If you plan to get a wig, I would suggest doing that while you still have hair, do it with a friend, or more!, and have fun. I am so glad that I did it that way. We had a blast trying on different styles and colors. But it was also an empowering act for me and my friend, and a way of taking control of a situation I have no control over. My hair has not yet started to go, but I am only 12 days past my first chemo. I'm guessing mine will start to go this weekend. Probably won't wear the wig all the time, but I am glad that I have that option.
Ask away with the questions. Someone here will be able to help. The journey is a lot less scary with these ladies.
Chris
Mary,
I lost my hair, but not compeletely right before my second chemo. After that I had falling again, but still not the whole.
I don't have port, my doctor even did not ask me for it.I'm stage 4.
I stopped working right after I was diagnosed. I got Cobra insurance. I want to work,but it depends of my condition after the chemo is over.
Agry, this place is great for us to ask and share.
1 -
Bald is beautiful 2!AWK 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
Done! I gave my husband full control. He shaved just one side first similar to the kids style with the rest flipped to the other side. Let's just say not a good look for a 58 year old. Actually, not a good look period! :-) Next a mohawk. My pitiful hair wouldn't stand up even short. Oh well. OK, then I took a swipe out of the middle of the mohawk. By this time the cape was hot and I was ready to be done. So, off came the rest. I had worked on my attitude for several days so this really became a non-event for me. I am walking around the house without a cover. My husband laughs at me and gives me lots of hugs. We are both good.
I'm going for a swim when the sun is off the pool. No hair worries for some months to come. woo hoo!
Passing by a mirror is still quite shocking. Who is that woman?!
1 -
Yay for you!TeddyandBears_Mom said:Bald is beautiful 2!
Done! I gave my husband full control. He shaved just one side first similar to the kids style with the rest flipped to the other side. Let's just say not a good look for a 58 year old. Actually, not a good look period! :-) Next a mohawk. My pitiful hair wouldn't stand up even short. Oh well. OK, then I took a swipe out of the middle of the mohawk. By this time the cape was hot and I was ready to be done. So, off came the rest. I had worked on my attitude for several days so this really became a non-event for me. I am walking around the house without a cover. My husband laughs at me and gives me lots of hugs. We are both good.
I'm going for a swim when the sun is off the pool. No hair worries for some months to come. woo hoo!
Passing by a mirror is still quite shocking. Who is that woman?!
i am right behind ya sistuh! it is amazing how fast the showers are!
1 -
hair lossRjchirp said:hair loss
Hi Mary. I started having scalp pain right before my 2nd chemo (just finished #4 last week). I had already cut my waist length hair super short. When the pain started, my husband buzzed my hair and the pain went away.
I have not worked since my surgery in April. My doc says many people do work during chemo, but my chemo hang-overs have been so rough I don't understand how. I do understand the financial need to work. My medical bills (despite insurance) are pilling up. In a month or so, I hope to return to working at a job I retired from 2 years ago to get those bills paid.
I understand having lots of questions. When I would ask my doc these types of questions, all I ever got was "well usually......". Not much help when you are in a black hole in need of a life line. The folks here have been a great help and comfort for me. Lots of good info and resources.
Thank you for responding. It really helps to know what to expect. Have you heard of anyone in stage 1 who has declined chemo initially and chose observation?
0 -
Anne,Thanks for your supportAWK said:Hi Mary - there are a couple of things you should check into
I took a short term disability leave during frontline (first type) chemo, returned to work and worked through 19 months of other treatments which took place every three weeks. if your company has an HR deptment you should speak with them. You can take FMLA leave which will protect your job while you are out for up twelve weeks. My company provides full pay for that same period through a combination of short term disability from the state and company offset. All of my benefits remain intact. The other thing that I was urged to do was register as a Disabled individual under the ADA act. This benefits both you and your company if it is of a certain size. In my case I was allowed to work from home after treatments which was a huge help. Confidentiality is attached to this although I ended up telling people I was still going through treatment. I work with a team and my team needed to understand how to reach me etc. it worked out well.
The most important thing is to be gentle with yourself. You can do this no matter what. Hugs - Anne
Anne,Thanks for your support and information. I work in a small Rural Health Clinic,(8 employees) and unfortunately do not have the benefits of a large organization. I was staged at 1B, I am looking at all options including observation. This site has been very helpful and comforting.
Thank You
0 -
Hi Chris,Editgrl said:Hi, Mary
I had a port put in under "conscious sedation" but I'm not sure what was all that conscious about it. I was out. I believe it's what used to be called twilight sleep and what is generally used for those undergoing colonoscopies as well. The procedure was easy. There was some pain after but I didn't even need to take ibuprofen for it. I did have to use my hand and arm on a limited basis for a few days, though. It does make the chemo much easier. I did not want to risk the damage to soft tissue that Taxol can sometimes cause.
As far as working, everyone has a different tolerance for the chemo and the side effects. I have only had one treatment, and my side effects have been minimal so far. However, I am self-employed, work at a sedentary job, and can pretty much set my own schedule.
If you plan to get a wig, I would suggest doing that while you still have hair, do it with a friend, or more!, and have fun. I am so glad that I did it that way. We had a blast trying on different styles and colors. But it was also an empowering act for me and my friend, and a way of taking control of a situation I have no control over. My hair has not yet started to go, but I am only 12 days past my first chemo. I'm guessing mine will start to go this weekend. Probably won't wear the wig all the time, but I am glad that I have that option.
Ask away with the questions. Someone here will be able to help. The journey is a lot less scary with these ladies.
Chris
Thanks for theHi Chris,
Thanks for the information. I like your idea of shopping for a wig with friends/ family . I'm thinking of being a redhead for awhile. I plan to purchase a wig, but also saw some really attractive caps also. I'm on the ledge about taking the chemotherapy, but your info has helped with my decision regarding the port.At what point post treatment would the port be removed?
0 -
Ugh, I wish I had better answers for you.mary8237 said:Anne,Thanks for your support
Anne,Thanks for your support and information. I work in a small Rural Health Clinic,(8 employees) and unfortunately do not have the benefits of a large organization. I was staged at 1B, I am looking at all options including observation. This site has been very helpful and comforting.
Thank You
My boss worked the whole way through her frontline. I will get some more info from her on how she managed it.
0 -
Thanks Anne and ConnieConnieSW said:Atta girl
Attitude will get you where you need to go.
Your support helped me more than you could possibly know.
My head is still very sensitive. The shorty bristles gave me some trouble last night in bed. Felt like little needles sticking my scalp. I'm hesitant to use a razor to clear out the bristles. Concerned that I'll get a razor burn. As it is, I have a huge red spot on the back of my scalp. I don't know if that was already there or if the clippers did it.
This morning I only have one small spot that has that needle effect. I have a feeling it is going to be this way off and on until all the follicles die. In the overall scheme of things, this is minor though.
I did wear a little headcover for a while in the evening. That lasted until my first hotflash. Then off it came! I ordered some cotton headcovers yesterday. I'm hoping they are cooler so that I can keep them on. If anyone has suggestions on what to get, please share. This is going to be trial and error for me I think.
I hope everyone has a great day. I'm off to chemo shortly!
Love,
Cindi
0 -
Have youTeddyandBears_Mom said:Thanks Anne and Connie
Your support helped me more than you could possibly know.
My head is still very sensitive. The shorty bristles gave me some trouble last night in bed. Felt like little needles sticking my scalp. I'm hesitant to use a razor to clear out the bristles. Concerned that I'll get a razor burn. As it is, I have a huge red spot on the back of my scalp. I don't know if that was already there or if the clippers did it.
This morning I only have one small spot that has that needle effect. I have a feeling it is going to be this way off and on until all the follicles die. In the overall scheme of things, this is minor though.
I did wear a little headcover for a while in the evening. That lasted until my first hotflash. Then off it came! I ordered some cotton headcovers yesterday. I'm hoping they are cooler so that I can keep them on. If anyone has suggestions on what to get, please share. This is going to be trial and error for me I think.
I hope everyone has a great day. I'm off to chemo shortly!
Love,
Cindi
been to the American cancer society's TLC site? You can also order their catalog. I liked the cotton kerchiefs with the lightly padded/ quilted part that goes across your forehead the best. It helped it stay in place and was more flattering than just a flat scarf. They also come in a soft interlock knit if you want a solid color but they are a tad warmer. When it gets cooler in a couple months, let me know if you are interested in a very flattering, comfortable interlock knit cap that my daughter found on etsy. The designer is a cancer survivor. I'll ask my daughter to help me recall the name of the shop. Before cancer I could never stand anything on my head, no matter how cold it got. Now I've become a hat person.
0 -
ConnieSW so gladConnieSW said:Have you
been to the American cancer society's TLC site? You can also order their catalog. I liked the cotton kerchiefs with the lightly padded/ quilted part that goes across your forehead the best. It helped it stay in place and was more flattering than just a flat scarf. They also come in a soft interlock knit if you want a solid color but they are a tad warmer. When it gets cooler in a couple months, let me know if you are interested in a very flattering, comfortable interlock knit cap that my daughter found on etsy. The designer is a cancer survivor. I'll ask my daughter to help me recall the name of the shop. Before cancer I could never stand anything on my head, no matter how cold it got. Now I've become a hat person.
you mentioned the TLC site. I just went there and saw some things I think I will get. I have always been awful at wrapping scarves and I really love those kerchiefs. I am definitely going to get one of those.
On the hair loss front, my scalp is beginning to hurt, so I guess I am getting close, but nothing is falling out quite yet. Tomorrow is 2 weeks post 1st chemo, so I'm thinking I'll begin shedding soon.
I also registered for a Look Good, Feel Better workshop later this month. I don't wear a lot of makeup, but if they can show me how to fake eyebrows decently, I figure it's worth it. I have essential tremor, so any use of eyeliner to help define my eyes is probably going to be out of the question for me!
0 -
Here is what my boss did.mary8237 said:Anne,Thanks for your support
Anne,Thanks for your support and information. I work in a small Rural Health Clinic,(8 employees) and unfortunately do not have the benefits of a large organization. I was staged at 1B, I am looking at all options including observation. This site has been very helpful and comforting.
Thank You
She worked through because her husband had lost his job and she was concerned about needing the time off if her cancer progressed and wanted to save it. When we get chemo we get a steroid with it to help with side effects. Because of that most of us get a steroid bounce and feel pretty good the day after treatment. She had hers on a Wednesday afternoon and did paperwork duReing the treatment. Felt pretty good to work Thursday and Friday until the afternoon then slept most of the weekend. She had six rounds one every three weeks like most of us. She recommended looking at how your workweek flows and see if you have a lighter day in the week for day three or four after chemo. She kept a written planner to keep track of things and kept herself on a sleeping routine. Took a nap after work. She, like most of us, nibbled through the day and stayed on top of exercise by taking daily walks. Stay hydrated. I use her tips currently and during my second and third lines of treatment when I worked too. My work from hime days were usually the lightest work day for me - didn't need to see clients etc and I arranged calls from home - but I understand your job is very different.
I wish you much health ahead and will keep you in my prayers. Hugs - Anne
0 -
Sleeping SolutionTeddyandBears_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
My naturopathic oncologist has me on 10 mg of Melatonin, 30 min before going to bed. Works like a charm! I have no trouble sleeping at all. She started me out on 20 mg. but it left me feeling a little groggy so we cut back o ten and it provides the same sleep support without the grogginess. Have told several of my friends who have trouble with insomnia about this and it worked for all of them as well. It's worth a try!
0 -
Hair lossTeddyandBears_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
This was the part I hated the most. But as soon as it started coming off in chunks in my hand, I had my husband shave it off. My daughter had already taken the lead in getting me hooked up with a vendor who only worked with women suffering from alopecia and chemo hair loss, so I had a wig ready to go as well as scarves and other head coverings. The funny part? Everyone liked my wigs better than my hair!! Got a little scary as I wasn't sure anyone would like me in just my natural hair anymore. But surprise, surprise...I have had blonde straight hair my whole life that I kept styled to the max. My hair came back in black, white, and curly! The curl relaxed over time but not the color and everyone loves it!!
0 -
What to expectmary8237 said:hair loss
I was recently diagnosed with UPSC stage 1B and will begin chemo in 3-4 weeks with taxol and cisto every 21 days. How soon after treatment begins will hair loss occur? Has anyone continued to work during treatment.I need to work to maintain my insurance. Does everyone have a port? When is it placed in office or under anesthesia? I appreciate your response.I have so many guestions.I feel blessed I found this site.
You are so lucky to be stage 1B! Yay! The nurses told me when I went in for my first chemo that my hair would be gone before I came back for the second treatment. They were right. Do yourself a favor and get yourself wigs and head coverings before you shave your head. I had few side effects from carbo-platin and taxol. I think everyone is a little different, but your own detemination will be a big factor as well. We can do much more than we think! I had a port installed this year and all I can say is I wish that I had done it sooner. It makes everything much easier. It is done with "twilight sleep" anesthesia. I plan to leave mine in for the next couple years. If you don't have any problem getting an IV line in, and you are only 1B, you may be "done" after this. It's up to the individual. I wish I had done it sooner. Good luck! - Helen
0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.8K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 309 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 397 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.4K Kidney Cancer
- 671 Leukemia
- 792 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 237 Multiple Myeloma
- 7.1K Ovarian Cancer
- 61 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.5K Prostate Cancer
- 1.2K Rare and Other Cancers
- 539 Sarcoma
- 730 Skin Cancer
- 653 Stomach Cancer
- 191 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards