Neulasta blues....

emilywillis

Emily, 27

I am about to get a full hysterectomy and bladder surgery Tuesday the 25th. Due to my low white blood cell counts (3.1) my doctor gave me a shot of Neulasta- I feel more weak now then ever. My back and neck are in extreme pain, sore throat, and a headache out of this world. “which is worse – my heartbreaking disease, or all the treatment/surgeries”. Not trying to sound like a downer but I am at a loss of how to feel. I cry, I laugh, I run out of emotions. I just want my life back… when does that happen… or does it??

leesag

Hi Emily,I'm 46, and was
Hi Emily,

I'm 46, and was diagnosed with Stage IIIC in January. TAH, omentumectomy, along with small spots resected on bladder and bowel in February. My surgeon was a gynecological oncologist.

I'm so sorry that you are going through this. There is no "right" way to feel. I've gone through all of the stages of grief since my diagnosis, anger, denial, sorrow, and just when I think I've reached acceptance, I start all over again! I have to say, that the most difficult times for me, emotionally, were waiting for surgery, and then, when I started feeling better, waiting for chemo to begin. Once things start happenning, it got easier for me because I felt like, finally, I was DOING something!

As for the emotional roller coaster, after trying to explain how I felt to my oncologist, she prescribed Celexa (a mood stabilizer/anti depressant) and Ativan (for anxiety). I was grateful for the Ativan, since sleeping at night was next to impossible and the Ativan helps me to slow my thoughts down and sleep. However, I resisted the Celexa at first, I've been taking it consistently for the past four weeks, and I've noticed that I am more positive and have fewer mood swings.

I think I've finally come to terms with the fact that my life changed forever after my diagnosis. I'm a teacher and my doctor wouldn't let me return to work during my treatments, so I've essentially been in a holding pattern since February, when I had my surgery. In fact, it wasn't until this last treatment (4 of 6) that I finally started thinking about life after chemo. Will it be different? Absolutely, but then, I've started over before and each time things have been different, but better. So, I'm scared, but hopeful.

You've come to the right place, Emily. You'll get many different perspectives from us, because we are very different people, but we are all going through the same cr*p. I love the women on this board! I have laughed my socks off, cried, cheered and prayed with these wonderful ladies. And occaisionally, raised my (very real) glass of wine in a (virtual) toast with them!

Hugs Honey!

Leesa

Shoot, I forgot the most important thing to tell you! Neulasta -- a heating pad and Ibuprofen are my salvation after Neulasta. In fact, I got a second heating pad, so I could have one for my back and one for my legs!

nancy591

leesag said:

Hi Emily,I'm 46, and was
Hi Emily,

I'm 46, and was diagnosed with Stage IIIC in January. TAH, omentumectomy, along with small spots resected on bladder and bowel in February. My surgeon was a gynecological oncologist.

I'm so sorry that you are going through this. There is no "right" way to feel. I've gone through all of the stages of grief since my diagnosis, anger, denial, sorrow, and just when I think I've reached acceptance, I start all over again! I have to say, that the most difficult times for me, emotionally, were waiting for surgery, and then, when I started feeling better, waiting for chemo to begin. Once things start happenning, it got easier for me because I felt like, finally, I was DOING something!

As for the emotional roller coaster, after trying to explain how I felt to my oncologist, she prescribed Celexa (a mood stabilizer/anti depressant) and Ativan (for anxiety). I was grateful for the Ativan, since sleeping at night was next to impossible and the Ativan helps me to slow my thoughts down and sleep. However, I resisted the Celexa at first, I've been taking it consistently for the past four weeks, and I've noticed that I am more positive and have fewer mood swings.

I think I've finally come to terms with the fact that my life changed forever after my diagnosis. I'm a teacher and my doctor wouldn't let me return to work during my treatments, so I've essentially been in a holding pattern since February, when I had my surgery. In fact, it wasn't until this last treatment (4 of 6) that I finally started thinking about life after chemo. Will it be different? Absolutely, but then, I've started over before and each time things have been different, but better. So, I'm scared, but hopeful.

You've come to the right place, Emily. You'll get many different perspectives from us, because we are very different people, but we are all going through the same cr*p. I love the women on this board! I have laughed my socks off, cried, cheered and prayed with these wonderful ladies. And occaisionally, raised my (very real) glass of wine in a (virtual) toast with them!

Hugs Honey!

Leesa

Shoot, I forgot the most important thing to tell you! Neulasta -- a heating pad and Ibuprofen are my salvation after Neulasta. In fact, I got a second heating pad, so I could have one for my back and one for my legs!

Ibuprofen
I thought Ibuprofen is a no-no with chemotherapy especially platinum based ones. I was told I can only take tylenol products.

nancy591

Emily
Are you recently diagnosed? Are your white counts low because you had to have chemo before your surgery?

Your life will be forever altered. After a period of mourning you will find your new routine. I still mourn and I still want my life back...but...I am happy. I have to be.... I know it does no good to spend too much time feeling sorry for myself. I hope you will find peace with this too. I believe you will!!! After all the surgery and chemo is over you will realize it was all worth it. I remember when I completed my very first cycle of chemo I thought I couldn't go on much longer. Now, I am fighting a recurrence and I am ready for battle. I realize it was all worth it...the aches, the nausea, being too tired to play with my kids. I am battling for them and, whatever the outcome may be, it will always be worth it.

Good luck, Emily. Stay strong and look toward the end of the treatments...it will be worth it!!

emilywillis

nancy591 said:

Emily
Are you recently diagnosed? Are your white counts low because you had to have chemo before your surgery?

Your life will be forever altered. After a period of mourning you will find your new routine. I still mourn and I still want my life back...but...I am happy. I have to be.... I know it does no good to spend too much time feeling sorry for myself. I hope you will find peace with this too. I believe you will!!! After all the surgery and chemo is over you will realize it was all worth it. I remember when I completed my very first cycle of chemo I thought I couldn't go on much longer. Now, I am fighting a recurrence and I am ready for battle. I realize it was all worth it...the aches, the nausea, being too tired to play with my kids. I am battling for them and, whatever the outcome may be, it will always be worth it.

Good luck, Emily. Stay strong and look toward the end of the treatments...it will be worth it!!

Very new diagnosed- and its
Very new diagnosed- and its been a whirl wind of emotions. I also suffer from a rare blood disorder where my blood cells don't reproduce as quickly as they should. No Chemo yet, surgery first seems to be the plan of attack. Scared would put this mildly.

A friend of friend said to come to this website and the ladies here are amazing- as I just found out with your two messages. I dealing more right now with my surgery- only 27 and no children. You always think "not me" and wow its me.. tears lots of tears.

Thank you both for putting a smile on my face today. And heating pad has not left my back today.

nancy591

emilywillis said:

Very new diagnosed- and its
Very new diagnosed- and its been a whirl wind of emotions. I also suffer from a rare blood disorder where my blood cells don't reproduce as quickly as they should. No Chemo yet, surgery first seems to be the plan of attack. Scared would put this mildly.

A friend of friend said to come to this website and the ladies here are amazing- as I just found out with your two messages. I dealing more right now with my surgery- only 27 and no children. You always think "not me" and wow its me.. tears lots of tears.

Thank you both for putting a smile on my face today. And heating pad has not left my back today.

oh, Emily
Emily, it is truly tragic. There is another gal on here who is 32, I believe. I am 43. I was 41 at diagnosis. Yes, it is mostly a post menopausal disease. What stage were you diagnosed at and how were you diagnosed?

For me, I believe, having young kids makes it tougher. I have a 23yrs old. She is out of the house and living her own life. I also have a 6yr and 4yr old. It saddens me to think of them growing up without a Mom.

Cancer was something that happened to other people. I'm sure you, like most of the women on here, you ate well and took care of yourself. I can tell you now ... your friends will have no idea of what you are going through. After the inital shock is over most of them will go on with their lives while you continue through this journey. This is why I find this board so helpful. I don't always blab all my feelings or complaints. But it helps me to listen to other peoples questions and concerns.

Good luck!!!!

azgrandma

nancy591 said:

oh, Emily
Emily, it is truly tragic. There is another gal on here who is 32, I believe. I am 43. I was 41 at diagnosis. Yes, it is mostly a post menopausal disease. What stage were you diagnosed at and how were you diagnosed?

For me, I believe, having young kids makes it tougher. I have a 23yrs old. She is out of the house and living her own life. I also have a 6yr and 4yr old. It saddens me to think of them growing up without a Mom.

Cancer was something that happened to other people. I'm sure you, like most of the women on here, you ate well and took care of yourself. I can tell you now ... your friends will have no idea of what you are going through. After the inital shock is over most of them will go on with their lives while you continue through this journey. This is why I find this board so helpful. I don't always blab all my feelings or complaints. But it helps me to listen to other peoples questions and concerns.

Good luck!!!!

i THINK it causes spams
i too am having horrible neck, stomach, back and throat spasms, it gets so bad wonder how long I can take it. I have had neulasta afater each chemo and three rounds of neupagen shots, they have gooten worse after the alst 4 neupagen shots, so yes it does cause mucles spasm

God Bless You it will get better

leesag

nancy591 said:

Ibuprofen
I thought Ibuprofen is a no-no with chemotherapy especially platinum based ones. I was told I can only take tylenol products.

I don't recall my doctor
I don't recall my doctor saying anything about that. I'll have to double check on my next visit.

YIKES!

L

EDIT: Just found this website about carboplatin http://www.cancer.org/docroot/CDG/content/CDG_carboplatin.asp
Ibuprofen and asprin products are DISCOURAGED due to risk of increased bleeding.

emilywillis

azgrandma said:

i THINK it causes spams
i too am having horrible neck, stomach, back and throat spasms, it gets so bad wonder how long I can take it. I have had neulasta afater each chemo and three rounds of neupagen shots, they have gooten worse after the alst 4 neupagen shots, so yes it does cause mucles spasm

God Bless You it will get better

YES
Neulasta causes spasms as well.. Its the worst pain I have ever felt. My knees, back, and hips(well ALL over) just hurts and spasms. When I first got neulasta I had so much pain it felt like every bone in my legs from my ankle to my hip was being crushed by an elephant, a screwdriver driven into the base of my spine, and the jaws of life squeezing my sides...all at once.

kayandok

Dear Emily,
I'm so sorry you had to join this board, but you have come to the right place!! You can come here anytime, ask questions, or just share your story, it really has helped me a lot. Please take it a day at a time, and don't let yourself think about all the "what if"s". This is not the time for that. You are young, and there is so much hope for you!!
Warm hugs and prayers,
kathleen

Karen9182

Oh deem blues...I got em too

Emily
Yes the Nulasta shot is a pain in the neck...and sternum and ribs..and legs. It felt like I had broken ribs.I've been told it is a result of the drugs work on the bone marrow where the white cells are made. It truly was awful--like the wore body aces from the flu you can imagine. I require shot before each cycle of chomo. Nice hot soaking baths with plenty of bubbles, gentle meditative music or meditations on my ipod, and candles helped sooth away some of da blues. It lasted about five days for me. I'll be back on it in a couple of weeks ready to start some more chemo, this time IP. I just finished my surgery for the hysterectomy etc. They thought they were going to have toake part of my colon, but the chemo had reduced the cancer so much there was no need. I found the recovery from the surgery not as uncomfortable, as the Nulasta, but the discomfort lasts longer--i am very impatient. I am glad there is something tom take to lift those white cells up to where they belong...there'd be no chemo without it, and without the chemo...
Take care and try and sooth those
Karen

LPack

shots
Emily,

I have had many many shots of Neulasta and Neumega and the side effects are different for each of us. A male friend of ours calls Neulasta shots Neunasty shots!!

I have back spasms, flu like symptoms, etc. with Neulasta (not so bad when I take Neupagen). With Neumega I have had swelling, blood shot eyes, red pin dot spots on skin. Yes sometimes the treatment seems worse then the disease.

I take tylenol. Also, a nice hot bath helps or heating pad. I use peroxyl for my throat. And now I actually go to a medical therapist which has helped immensely for my back spasms.

Living for Eternity,
Libby