First Chemo Tomprrow

Hi All....

My first chemo is tomorrow, scheduled for 7 hours....geesh

I am really struggling with anxiety of not knowing what will happen and how I will feel afterwards...is this normal?

I love you all so much, I am literally taking you all with me to help fight this disease...they have wi-fi at my oncologists office, so I can talk to you all while I am there.

 

Carie

NHL Follicular, stage 3, type A

kickin' it's butt one day at a time

Comments

  • jimwins
    jimwins Member Posts: 2,107
    Hey Girliefighter :)

    Hi Carie :).  Based on your "about me" page, you're starting CVP+R - right?  Anxiety is very normal - especially the first time because you don't know what to expect.  You will get more comfortable with treatment as you go along - no picnic but you will adjust.  Reactions to treatment are somewhat individual but you will probably do better than you expected.  I was really scared my first treatment (R-EPOCH) and my treatments were over 5 days in the hospital (4 nights).  I was always so ready to get out of there even though everyone was extremenly nice and helpful and the food was actually good there.  I got to order my meals like room service and some days I probably ate 5 or 6 times thanks to prednisone ;).  It helped me to focus on milestones like halfway there, only two more to go, etc. and have little mini celebrations along the way. 

    You will most likely experience fatigue during treatment that gets progressively worse as you continue your cycles.  If you are given steroids (like prednisone), you may experience mood swings and excitability, appetite increase, difficulty sleeping, etc.  If your regimen will cause you to lose your hair, it's much easier to take charge and cut/shave it yourself.  You can find silly hats and headgear and actually have some fun with it.  I wore funky "dew rags", animal hats, a fedora, etc. Toward the end, I looked like an alien or that guy from the movie, "Powder" but I managed to get through it and even laugh at it.

    You will learn how you react and what you can do to prepare before/druing future treatments.  For example, I had problems with constipation so I started taking senokot the day before I started treatment.  I had a mouth sore once - triggered I think from eating acidic food so I avoided this kind of food during treatment and for about a week after and had no more issues. 

    Be good to yourself through all this - you deserve it, Carie.  Don't push yourself if you're tired or don't feel like doing certain things/chores.  Don't be afraid to ask people to help with some things as well.  As many people say here, "Take it a day at a time".   Try to laugh when you can - it really helps - I promise.  Humor and attitude don't cost a dime.

    We'll be there with you and we love you back, Carie. 

    Big hugs - Jim

     

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    Long haul...

    Carie,

    It is great to start out positive. I did. A month later, I could barely get out of bed.  Six months later, treatment was over.   Just realize that this will take a little time. Expect to feel bad, real bad.  The end goal is all that counts.  Your youth and energy are huge positives.

    My infusions were long as well; it took 8 hours, on average, to do bags of r-abvd, along with the fluid bags thrown in to assist the kidneys.

    As Jim asked: What meds are you doing ? They vary a lot in prospective side-effects. My strain of the disease and its drugs were different, but whatever drugs you use, a lot of folks here will have insightful information regarding them.

    Bless your treatment,

    max

  • girliefighter
    girliefighter Member Posts: 232
    jimwins said:

    Hey Girliefighter :)

    Hi Carie :).  Based on your "about me" page, you're starting CVP+R - right?  Anxiety is very normal - especially the first time because you don't know what to expect.  You will get more comfortable with treatment as you go along - no picnic but you will adjust.  Reactions to treatment are somewhat individual but you will probably do better than you expected.  I was really scared my first treatment (R-EPOCH) and my treatments were over 5 days in the hospital (4 nights).  I was always so ready to get out of there even though everyone was extremenly nice and helpful and the food was actually good there.  I got to order my meals like room service and some days I probably ate 5 or 6 times thanks to prednisone ;).  It helped me to focus on milestones like halfway there, only two more to go, etc. and have little mini celebrations along the way. 

    You will most likely experience fatigue during treatment that gets progressively worse as you continue your cycles.  If you are given steroids (like prednisone), you may experience mood swings and excitability, appetite increase, difficulty sleeping, etc.  If your regimen will cause you to lose your hair, it's much easier to take charge and cut/shave it yourself.  You can find silly hats and headgear and actually have some fun with it.  I wore funky "dew rags", animal hats, a fedora, etc. Toward the end, I looked like an alien or that guy from the movie, "Powder" but I managed to get through it and even laugh at it.

    You will learn how you react and what you can do to prepare before/druing future treatments.  For example, I had problems with constipation so I started taking senokot the day before I started treatment.  I had a mouth sore once - triggered I think from eating acidic food so I avoided this kind of food during treatment and for about a week after and had no more issues. 

    Be good to yourself through all this - you deserve it, Carie.  Don't push yourself if you're tired or don't feel like doing certain things/chores.  Don't be afraid to ask people to help with some things as well.  As many people say here, "Take it a day at a time".   Try to laugh when you can - it really helps - I promise.  Humor and attitude don't cost a dime.

    We'll be there with you and we love you back, Carie. 

    Big hugs - Jim

     

     

    Jim,
    Thank you for all of

    Jim,

    Thank you for all of your advice, it is very much appreciated. I am the type of person that can get through anything if i know what I am up against. I will be on Cytoxan, Vincristine, Predinsone and Rituxan once every 21 days for 6 treatments (God willing). I am struggling the most with the hair loss, I have very long hair and I LOVE IT...I don't know how I am gonna get through that yet. I am a single mother with an 8 year old boy, so I am sure alot will be a struggle for me. My job told me that if I don't work 36 hours a week until may 14th (one year hire date) that they will terminate me. I have been looking into just doing disability so that I don't have to worry about working. I am a retail manager and have to work with the public, long hours on my feet and days, nights, weekends.

    and still after all that, all I care about is losing my hair and gaining weight. I know that I have my priorities all mixed up, but cancer shouldn't come at the same time a mid-life crisis does :)

    Gonna rock this out

    Carie

  • Joemory21
    Joemory21 Member Posts: 41
    Good luck

    I had trouble sleeping before my first round and Fell asleep in the chemo chair for about an hour. It has not been as bad as I was thinking it would be I'm not saying its easy at all but I'm doing ok. So i hope the best for you in kicking this thing. 

    Jonathan

  • girliefighter
    girliefighter Member Posts: 232

    Long haul...

    Carie,

    It is great to start out positive. I did. A month later, I could barely get out of bed.  Six months later, treatment was over.   Just realize that this will take a little time. Expect to feel bad, real bad.  The end goal is all that counts.  Your youth and energy are huge positives.

    My infusions were long as well; it took 8 hours, on average, to do bags of r-abvd, along with the fluid bags thrown in to assist the kidneys.

    As Jim asked: What meds are you doing ? They vary a lot in prospective side-effects. My strain of the disease and its drugs were different, but whatever drugs you use, a lot of folks here will have insightful information regarding them.

    Bless your treatment,

    max

    energy hahahaha

    Max,

    Thank you for your encouragement. What did you do with all of your time during those treaments? I am scared that I am going to sit there and cry all day tomorrow. I am having a very difficult time accepting any of this, I hate my med port. I hate my scars on my chest and neck.

    I will be on Cytoxan, Vincristine, Prednisone and Rituxan once every 21 days.

    I truly wish I had this elusive energy that you speak of...Laughing My only problem so far has been my fatigue since september, which is how I ended up getting diagnosed. I wish I could have my own tub full of B12 shots, but it sounds as though this prednisone is going to keep me awake for days.

    Many people on here have had MUCH worse journeys than me, so at times I feel guilty for not having it so bad as of yet. Is this a normal thought process? I also feel guilty that my family and friends are having so much pain to deal with because I got "sick"

    I am pretty sure that my non acceptance of this disease is from everything moving along so rapidly, I haven't had time to adjust yet.

    I appreciate your thoughts- sometimes just sharing our journeys or thoughts on here makes me be able to have a do-able day

    Carie

  • girliefighter
    girliefighter Member Posts: 232
    Joemory21 said:

    Good luck

    I had trouble sleeping before my first round and Fell asleep in the chemo chair for about an hour. It has not been as bad as I was thinking it would be I'm not saying its easy at all but I'm doing ok. So i hope the best for you in kicking this thing. 

    Jonathan

    ThANK YOU

    Jonathan,

    Thank you... I have already requested my own personal tank of laughing gas to wheel around while I battle this "bugger."

    I am pretty sure I am going to sleep alot this weekend, I took the weekend off from work. Well....actually they have me scheduled to work on saturday....(i am calling in sick)

     

    Carie

  • allmost60
    allmost60 Member Posts: 3,178 Member

    Hi Carie,

    I remember as if it was yesterday my first day of chemo, which by the way, is the same kind you will be getting...(CVP-R). You will definetely have a long day, as they administer the Rituxan part of the chemo very slowly. My first day I was 8 hours at the clinic. The hardest part for me was the 5 days of prednisone. I just didn't like the jittery, moody, no sleep that the prednisone caused for me. I hope you will do better on it, but at least it's only for 5 days. I got more tired with each round, and by the time my last round came due, I was wiped out. Just rest, drink lots of fluid and know that the end result will be worth anything bad you may go through. This is no walk in the park, but it is totally doable. Try to relax tonight..(easier said than done), and remember we will be here for you every step of the way. Good luck my dear and all of my positive thoughts and prayers will be with you tomorrow. Much love....Sue

    (Follicular NHL-stg3-typA-grd2-Dx 6/10-age 62) In remission!

  • girliefighter
    girliefighter Member Posts: 232
    allmost60 said:

    Hi Carie,

    I remember as if it was yesterday my first day of chemo, which by the way, is the same kind you will be getting...(CVP-R). You will definetely have a long day, as they administer the Rituxan part of the chemo very slowly. My first day I was 8 hours at the clinic. The hardest part for me was the 5 days of prednisone. I just didn't like the jittery, moody, no sleep that the prednisone caused for me. I hope you will do better on it, but at least it's only for 5 days. I got more tired with each round, and by the time my last round came due, I was wiped out. Just rest, drink lots of fluid and know that the end result will be worth anything bad you may go through. This is no walk in the park, but it is totally doable. Try to relax tonight..(easier said than done), and remember we will be here for you every step of the way. Good luck my dear and all of my positive thoughts and prayers will be with you tomorrow. Much love....Sue

    (Follicular NHL-stg3-typA-grd2-Dx 6/10-age 62) In remission!

    Sue,
    I just love seeing "in

    Sue,

    I just love seeing "in remission" after your name.

    I am actually at my oncologiists office right now getting some drugs pumped into me, some antimedics right now.

    Did you lose your hair? get nausea? I am praying that I will just be tired and that will be it, but the more I read the more freaked out I get.Surprised

    Thank you for all you provide to all of us here....You are so motivating and inspirational

     

    Carie

  • Rocquie
    Rocquie Member Posts: 868 Member

    Sue,
    I just love seeing "in

    Sue,

    I just love seeing "in remission" after your name.

    I am actually at my oncologiists office right now getting some drugs pumped into me, some antimedics right now.

    Did you lose your hair? get nausea? I am praying that I will just be tired and that will be it, but the more I read the more freaked out I get.Surprised

    Thank you for all you provide to all of us here....You are so motivating and inspirational

     

    Carie

    First Time

    Hi Carie, I see you are well on your way with your 1st chemo. I hope that is going well. The actual chemo never bothered me. I had no problems with the prednisone either--it did give me a lot of energy and I joked with my doctor about being on "performance enhancing drugs".  I did use Ativan for both nausea and anxiety--lots of patients do. I'm sure your doctor will give you a prescription if you need it. Having said that, I never had any real problems with nausea like many people do and I'm very thankful for that. I did not gain weight.

    During the hours of chemo, I would read, surf the web, listen to relaxing music and guided imagery. My nurses were very sweet and saw to my comfort, bringing me warm blankets and snacks. I would visit with other patients also receiving infusions. The time always passed by plesantly.

    I did lose my hair. That was a biggie for me too. The worst part of it for me was having no choice but to reveal to the world, through my baldness, that I have cancer. I am a very private person and I didn't really want the cashier at the grocery store, the bank teller, my librarian to know I had cancer, nor did I want to feel obligated to discuss it with them.

    I discovered that I am not a wig person. I do have a wig and I occasionally wear it but I always feel like I am dressed in a costume and find it very uncomfortable. I never did the scarf thing either. I wear hats. I found some very cute and comfortable hats online. I accessorize them with flower pins and broaches.

    (((Hugs)))

    Rocquie

     

  • allmost60
    allmost60 Member Posts: 3,178 Member

    Sue,
    I just love seeing "in

    Sue,

    I just love seeing "in remission" after your name.

    I am actually at my oncologiists office right now getting some drugs pumped into me, some antimedics right now.

    Did you lose your hair? get nausea? I am praying that I will just be tired and that will be it, but the more I read the more freaked out I get.Surprised

    Thank you for all you provide to all of us here....You are so motivating and inspirational

     

    Carie

    No...

    Hi Carie,

     No..I did not lose all of my hair. I had very long hair before chemo, but decided to get a shorter cut before starting treatments. My Onc said I would lose it all, but he was wrong...it really thinned and I had to have my hair dresser work some magic covering up the thin area's, but at least I didn't have to shave my head. I did not get sick once from chemo, but had a prescription of Zofran on hand just in case. Be sure to take a stool softner everyday during the 6 rounds of chemo. I used Senokot-D which is very mild and just keeps you regular. The Vincristine in your chemo is notorious for causing constipation. The trick is to take one to two tablets EVERY day no matter what, even if you are going to the bathroom. My pre-meds made me sleep through chemo days...maybe you will too....sure makes the day go faster. They gave me Benedryl and Lorazepam(Sp?) along with 2 tabs of tylenol. You are in my prayers today with good vibes and positive thoughts headed your way. Hang in there sweetie!

    Much love...Sue  (FNHL-2-3A-6/10-age62) Remission! 

  • anliperez915
    anliperez915 Member Posts: 770
    Hi Carie

    Hi Carie,

    Just wanted to drop by and let you know that I'm also thinking of you! I only had Rituxan so I can't give you much advise but I hope your first chemo goes extremely well!!! Take care and we are all here for you! (((Hugs)))

    Sincerely,

    Liz

  • girliefighter
    girliefighter Member Posts: 232

    Hi Carie

    Hi Carie,

    Just wanted to drop by and let you know that I'm also thinking of you! I only had Rituxan so I can't give you much advise but I hope your first chemo goes extremely well!!! Take care and we are all here for you! (((Hugs)))

    Sincerely,

    Liz

    Many Thanks

    Liz,

    Thank you for stopping by..I am home from my first treatment and just feel a lil bit tired and "stoned"

    I enjoy being on here and actually channel alot of strength from this discussion boards and group of inspiring individuals. it seems different than talking to my friends or blood family, you guys are my "fighting family"

     

  • girliefighter
    girliefighter Member Posts: 232
    Rocquie said:

    First Time

    Hi Carie, I see you are well on your way with your 1st chemo. I hope that is going well. The actual chemo never bothered me. I had no problems with the prednisone either--it did give me a lot of energy and I joked with my doctor about being on "performance enhancing drugs".  I did use Ativan for both nausea and anxiety--lots of patients do. I'm sure your doctor will give you a prescription if you need it. Having said that, I never had any real problems with nausea like many people do and I'm very thankful for that. I did not gain weight.

    During the hours of chemo, I would read, surf the web, listen to relaxing music and guided imagery. My nurses were very sweet and saw to my comfort, bringing me warm blankets and snacks. I would visit with other patients also receiving infusions. The time always passed by plesantly.

    I did lose my hair. That was a biggie for me too. The worst part of it for me was having no choice but to reveal to the world, through my baldness, that I have cancer. I am a very private person and I didn't really want the cashier at the grocery store, the bank teller, my librarian to know I had cancer, nor did I want to feel obligated to discuss it with them.

    I discovered that I am not a wig person. I do have a wig and I occasionally wear it but I always feel like I am dressed in a costume and find it very uncomfortable. I never did the scarf thing either. I wear hats. I found some very cute and comfortable hats online. I accessorize them with flower pins and broaches.

    (((Hugs)))

    Rocquie

     

    Hugs are welcome here

    Rocquie

    I really appreciate you sharing your journey with me, it helps me mentally prepare for what may happen...

    this hair thing is haunting me...I know its just hair and it grows back but it will take years and like you i don't publically want to be "the cancer patient" I already have 2 wigs, due to my best friend working at a look good feel better salon. Planning on purchasing a long real hair one so I can style it.

     

    Carie

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member

    Long haul...

    Carie,

    It is great to start out positive. I did. A month later, I could barely get out of bed.  Six months later, treatment was over.   Just realize that this will take a little time. Expect to feel bad, real bad.  The end goal is all that counts.  Your youth and energy are huge positives.

    My infusions were long as well; it took 8 hours, on average, to do bags of r-abvd, along with the fluid bags thrown in to assist the kidneys.

    As Jim asked: What meds are you doing ? They vary a lot in prospective side-effects. My strain of the disease and its drugs were different, but whatever drugs you use, a lot of folks here will have insightful information regarding them.

    Bless your treatment,

    max

    How time spent ?

    Much of the first 90 minutes or so were spent sleeping, since the day began with a heavy dose of Benadryl. I carried books and went through magazines later. The last few hours required trips to the rest room every 15 or 20 minutes, to pass the ton of fluids they were pumping in.   I felt like the Michelin Man at the end of each treatment !

    But, the treatments never seemed long; they were always busy checking the infusion, changing bags, etc:  There was always something going on.  Also, I talked a lot to the patients nearby, and made some good friends in the process. There were over 30 infusion stations at the Center, and everyone had a different type of cancer, a different story.

    max

  • jimwins
    jimwins Member Posts: 2,107

    Many Thanks

    Liz,

    Thank you for stopping by..I am home from my first treatment and just feel a lil bit tired and "stoned"

    I enjoy being on here and actually channel alot of strength from this discussion boards and group of inspiring individuals. it seems different than talking to my friends or blood family, you guys are my "fighting family"

     

    Hi Carie

    One down and "X" more to go :). I like your comment "Fighting Family" - it's a good phrase. Congratulations on getting numero uno out of the way!

    Hugs - Jim