Dis Breast Cancer Survivors Part IV - GAGWTA

[Feralpeg]

Disneyholic, thinking of you! Just take it one day at a time!

My hair started falling out about two weeks after my first chemo. It was such a mess. There was hair all over my pillow and it came out in globs when I towel dried my hair. I went to my hair stylist and told her to shave it all off. I looked like Bruce Willis, but it was so much better.

I was able to deduct the cost of my wig on my taxes!

Hang in there. It will be behind you before you know it!

 

[ThistleMae]

So appreciative of everyone who posts in here. It's so helpful to know we are not alone in our struggles. God Bless each and every one of you!

 

[disneyholic family]

So appreciative of everyone who posts in here. It's so helpful to know we are not alone in our struggles. God Bless each and every one of you!

and i so much appreciate this thread...

being able to come in here and share my journey with others who have done the same - learning from you, benefiting from your support...

especially with like-minded disney lovers!!!

it really does help so very much!!!!

so thank you!!!!

.

 

[ThistleMae]

and i so much appreciate this thread...

being able to come in here and share my journey with others who have done the same - learning from you, benefiting from your support...

especially with like-minded disney lovers!!!

it really does help so very much!!!!

so thank you!!!!

.

 

[The Mystery Machine]

Hi ho! Just dropping in to say that I had my yr 2 mammo and sono and cancer free!

Bad news is that my lymphedema has progressed into my breast. I had not been doing the pump machine because things have been so crazy and I will be honest, the Flexipump is easy but it does require absolute dedication to using it.

My breast surgeon explained that the fatigue and muscle weakness I feel is because of the lymphedema. Ugh. It has something to do with enzymes and such. Basically she said that my body thinks like it is doing a "workout" all the time. That explains a lot.

She is typing a note for me explaining my condition, so I can bring it to my doctors to explain the condition I have.

Hope all of you are OK and hanging in there. GAGWTA!

 

[kittylady1972]

Hi ho! Just dropping in to say that I had my yr 2 mammo and sono and cancer free!

Bad news is that my lymphedema has progressed into my breast. I had not been doing the pump machine because things have been so crazy and I will be honest, the Flexipump is easy but it does require absolute dedication to using it.

My breast surgeon explained that the fatigue and muscle weakness I feel is because of the lymphedema. Ugh. It has something to do with enzymes and such. Basically she said that my body thinks like it is doing a "workout" all the time. That explains a lot.

She is typing a note for me explaining my condition, so I can bring it to my doctors to explain the condition I have.

Hope all of you are OK and hanging in there. GAGWTA!

YAY...congrats for being cancer free!

Sorry about the lymphedema issues.

 

[Pea-n-Me]

Some insurances cover wigs, too. They're considered a necessary replacement, sorry, the right term isn't coming to me right now.

ETA it's a prosthesis!!

 

[disneyholic family]

Hi ho! Just dropping in to say that I had my yr 2 mammo and sono and cancer free!

Bad news is that my lymphedema has progressed into my breast. I had not been doing the pump machine because things have been so crazy and I will be honest, the Flexipump is easy but it does require absolute dedication to using it.

My breast surgeon explained that the fatigue and muscle weakness I feel is because of the lymphedema. Ugh. It has something to do with enzymes and such. Basically she said that my body thinks like it is doing a "workout" all the time. That explains a lot.

She is typing a note for me explaining my condition, so I can bring it to my doctors to explain the condition I have.

Hope all of you are OK and hanging in there. GAGWTA!

great news on the cancer!!!

so sorry about the lymphedema! that is so awful....my cousin's having trouble with lymphedema too....

i hope you're able to overcome it....would physical therapy help?

i have to go look up the pump machine you're talking about....i'm not familiar with that..

.

 

[Pea-n-Me]

Hi ho! Just dropping in to say that I had my yr 2 mammo and sono and cancer free!

Bad news is that my lymphedema has progressed into my breast. I had not been doing the pump machine because things have been so crazy and I will be honest, the Flexipump is easy but it does require absolute dedication to using it.

My breast surgeon explained that the fatigue and muscle weakness I feel is because of the lymphedema. Ugh. It has something to do with enzymes and such. Basically she said that my body thinks like it is doing a "workout" all the time. That explains a lot.

She is typing a note for me explaining my condition, so I can bring it to my doctors to explain the condition I have.

Hope all of you are OK and hanging in there. GAGWTA!

I am so sorry you're still dealing with this. Seems like a very unusual case - is that what they're saying?

 

[disneyholic family]

so on wednesday, a week after the neulasta shot, i had THE most intense spine pain i've ever had...

it started out in my lower back, but moved all the up into my neck...

i only figured out today that it must have been caused by that shot...i mean, normal back pain doesn't go away so quickly so the shot is all that makes sense....

when it was happening, i didn't know what it was and it was too late at night to call the number i'm supposed to when i have questions/issues..

the pain got so intense in my chest/neck area i even considered the possibility that it was my heart but because of the lower back, i thought that maybe the intensity of the lower back pain was radiating up..

just now when it dawned on me that maybe it was the neulasta, i googled spine pain and neulasta and voila!!! lots of people asking the very same thing and others reporting that yes, they too had pain like that a week after the shot..

so that's good...well not good i had the pain, but good that it was just the shot!!!

.

 

[Pea-n-Me]

so on wednesday, a week after the neulasta shot, i had THE most intense spine pain i've ever had...

it started out in my lower back, but moved all the up into my neck...

i only figured out today that it must have been caused by that shot...i mean, normal back pain doesn't go away so quickly so the shot is all that makes sense....

when it was happening, i didn't know what it was and it was too late at night to call the number i'm supposed to when i have questions/issues..

the pain got so intense in my chest/neck area i even considered the possibility that it was my heart but because of the lower back, i thought that maybe the intensity of the lower back pain was radiating up..

just now when it dawned on me that maybe it was the neulasta, i googled spine pain and neulasta and voila!!! lots of people asking the very same thing and others reporting that yes, they too had pain like that a week after the shot..

so that's good...well not good i had the pain, but good that it was just the shot!!!

.

Yup, the neulasta pain is awful! I felt like I was 90 years old just trying to walk to the bathroom!

 

[ThistleMae]

Hi ho! Just dropping in to say that I had my yr 2 mammo and sono and cancer free!

Bad news is that my lymphedema has progressed into my breast. I had not been doing the pump machine because things have been so crazy and I will be honest, the Flexipump is easy but it does require absolute dedication to using it.

My breast surgeon explained that the fatigue and muscle weakness I feel is because of the lymphedema. Ugh. It has something to do with enzymes and such. Basically she said that my body thinks like it is doing a "workout" all the time. That explains a lot.

She is typing a note for me explaining my condition, so I can bring it to my doctors to explain the condition I have.

Hope all of you are OK and hanging in there. GAGWTA!

Congrats! Now you have to plan for living! Is the lymphedema very painful?

 

[luvmarypoppins]

Finally checking in

disneyholic - welcome, but sorry you have to be here. Everyone here is such a great encouragement and source of information. Wishing you all the best and sorry you are dealing with the side effects of the chemo. They have adopted me here as I have thyroid cancer but like to hang out with these great ladies (and guys too).

Linda - hope your dd's interview went well and that she got the job if it is one she really wanted!

Peg - wishing Kendall all the best with the ms testing. Hoping she will have good results

Mystery Machine - Great news on the test results but sorry you are dealing with the lymphedema. I have it in my left arm since they cut so much stuff out of me the first surgery I had. This recurrence they wouldnt put the iv in my Left arm due to it.

ThistleMae - I hoe you have a great disney trip. I think it is soon??

Hi to everyone else too!!

Friday I went for my six month blood tests and sonogram. I got my regular girl which I love and was happy. She didnt go down the hall to the radiologist and she told me the rad. left and said she was only to take more pictures if she saw something and she told me she didnt, so I guess that is good. But honestly I dont trust anyone or anything except God these days. Dh and ds3 say I should just be happy. I guess my mind just works a little differently in how I deal with things these days, sigh. Next up is the endo visit in a few weeks and I need to schedule the pulmonary testing and mammo. Trying to avoid all the flu germs too. With ds3 in the er the other day I ask him to take off his scrubs asap when he gets home lol. He said the hop. is so full they have patients in the hall, gheesh.

I am starting to look at dresses/gowns for the wedding. I am prob doing navy blue. My future dil said that was ok as she wants a black and white wedding. I personally think black is a little dark for a wedding. She said no to any lighter color. Its ok with me. I like dark colors anyway.

Hoping dh and I will get to disney in May. I told ds2 make sure the bridal shower is not then lol.

GAGWTA. Thinking of you all.

 

[Feralpeg]

Disneyholic, Unfortunately, the Neulasta is terrible. When I was having the shots, I would get severe pain in my sternum. It felt like a heart attack. It was horrible. I asked the doctor about it. He said the majority of red blood cells are created in the sternum. The Neulasta, while increasing red blood cell production, is very uncomfortable. Sorry you're going through this. It will be over soon!

 

[disneyholic family]

disneyholic - welcome, but sorry you have to be here. Everyone here is such a great encouragement and source of information. Wishing you all the best and sorry you are dealing with the side effects of the chemo. They have adopted me here as I have thyroid cancer but like to hang out with these great ladies (and guys too).

Friday I went for my six month blood tests and sonogram. I got my regular girl which I love and was happy. She didnt go down the hall to the radiologist and she told me the rad. left and said she was only to take more pictures if she saw something and she told me she didnt, so I guess that is good. But honestly I dont trust anyone or anything except God these days. Dh and ds3 say I should just be happy. I guess my mind just works a little differently in how I deal with things these days, sigh. Next up is the endo visit in a few weeks and I need to schedule the pulmonary testing and mammo. Trying to avoid all the flu germs too. With ds3 in the er the other day I ask him to take off his scrubs asap when he gets home lol. He said the hop. is so full they have patients in the hall, gheesh.

I am starting to look at dresses/gowns for the wedding. I am prob doing navy blue. My future dil said that was ok as she wants a black and white wedding. I personally think black is a little dark for a wedding. She said no to any lighter color. Its ok with me. I like dark colors anyway.

Hoping dh and I will get to disney in May. I told ds2 make sure the bridal shower is not then lol.

GAGWTA. Thinking of you all.

hi back at you!!

yes all the flu around is distressing....
i have a mask in my purse that i slap over my face whenever i'm in any sort of tight area with other people..
today i had to have my blood tests for chemo tomorrow..
the way they do it here, you go to your own clinic for the blood tests....(chemo here is done in hospitals - but i go to a private hospital that doesn't have sick patients, only surgical)...
i got to my local clinic at 6:45 (the blood lab opens at 7)..
there was a man coughing his guts out so i stood far away from the lab with my mask on..
they opened 10 minutes early to get me in away from him!!!!
so that was really nice of them!!!!

black and white weddings seem to be the rage....
i was just at one in november (before i was diagnosed)..
it looks very elegant, but yes, kind of severe....
it's not as if the guests were in black tie, but the wedding party did look elegant...definitely...

i hope you get to go to disney in may.....and if you do, i'd love to hear about it! i'm living vicariously through my friends trips for now!!

 

[disneyholic family]

Disneyholic, Unfortunately, the Neulasta is terrible. When I was having the shots, I would get severe pain in my sternum. It felt like a heart attack. It was horrible. I asked the doctor about it. He said the majority of red blood cells are created in the sternum. The Neulasta, while increasing red blood cell production, is very uncomfortable. Sorry you're going through this. It will be over soon!

thanks for that information!!! that's very helpful to know!!
when i was in pain, i didn't consider the neulasta, as it was my second chemo and i hadn't reacted at all after the first neulasta shot...

yes, i definitely was having pain in the sternum....

so now i'll know for next time!!!! as long as i know what it is, it's a lot less distressing...painful, but not as anxiety producing!!!!!

 

[ThistleMae]

Do any of you still have breast pain once the cells were removed? I still have pain all around the incision and my breast is very sore most of the time. I wonder if this is the case for most people? And...my Disney trip is coming up in five days! Whoo hoo! I've been using rubber gloves at my library job and using the germX once I take them off after putting books away. I had a cough for two weeks, and still cough a little in the a.m. but then it clears. Don't know what that's all about. I have my yearly physical today, it seems like I'm always at the doctors...go figure....lol. So glad this thread is here. Weddings can be great fun....dance till you can't stand up!

 

[disneyholic family]

Do any of you still have breast pain once the cells were removed? I still have pain all around the incision and my breast is very sore most of the time. I wonder if this is the case for most people? And...my Disney trip is coming up in five days! Whoo hoo! I've been using rubber gloves at my library job and using the germX once I take them off after putting books away. I had a cough for two weeks, and still cough a little in the a.m. but then it clears. Don't know what that's all about. I have my yearly physical today, it seems like I'm always at the doctors...go figure....lol. So glad this thread is here. Weddings can be great fun....dance till you can't stand up!

i hope your physical went well!
have fun at disney!!!

.

 

[The Mystery Machine]

great news on the cancer!!!

so sorry about the lymphedema! that is so awful....my cousin's having trouble with lymphedema too....

i hope you're able to overcome it....would physical therapy help?

i have to go look up the pump machine you're talking about....i'm not familiar with that..

.

PT helps, but I have to be very faithful and strict and do it daily. I have not been doing well with care of myself. My life has been a bit crazy on top of my issues.

Flexitouch pump. https://www.tactilemedical.com/products/flexitouch-system/

This is the pump system for lymphedema if you can get your insurance to pay for it. It is the Cadillac for treatment. However my PT does not like them. She would rather you do MLD, manual lymph drainage.

I have NOT been doing the pump unfortunately. My breast surgeon told me I have to start again and be aggressive using it.

 

[The Mystery Machine]

Congrats! Now you have to plan for living! Is the lymphedema very painful?

It is more fatigue and heaviness. It feels like I have been lifting weights all day. Surgeon explained that it is a chemical thing with enzymes and such. I have not had the time to dig into it, yet.