First Rituxan Maintenance DONE!!!

girliefighter
girliefighter Member Posts: 232
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Fellow Lymphomaniacs,

I just wanted to let you know that I kicked that first Rituxan treatments butt today...It was a rough fight, not really..

I was a might bit concerned when the oncologist office called me yesterday to tell me that my B-12 level was at like 230, which is apparently too low. Oh well, they gave me a shot of it today to hopefully boost me back up.

I just got done battling those darn shingles again, third time in the past year GEEZ...can a girl get a break around here? I am not talking about breakin me off a piece of thet Kit-Kat bar either..Laughing

Still workin 40 hours a week, going to school full time and trying my hardest to be "THE BEST MOM EVER", of course he only tells me that when he wants something or has done something he shouldn't have.

Looks like everyone is doing well or as well as can be expected on here....I see lots of new names on here, which is good but at the same time bad. I just wish that the diagnosis' would start to drastically slow down<----pipedream I know.

Sending my Love to all

XXXOOO

Carie

Comments

  • Unknown
    Unknown
    #2
    Childs play ....

    .... Compared to chemo. Sorry about the shingles. I know it hurts as my Mom and sister had it. I took a shingles vaccine before starting therapy. Got my fingers crossed. Be sure to not touch your eyes after touching the shingles. It is a virus and in some cases can be spead. 

     

    Take care and don't overdo it.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #3
    unknown said:

    Childs play ....

    .... Compared to chemo. Sorry about the shingles. I know it hurts as my Mom and sister had it. I took a shingles vaccine before starting therapy. Got my fingers crossed. Be sure to not touch your eyes after touching the shingles. It is a virus and in some cases can be spead. 

     

    Take care and don't overdo it.

    Shingles

    My oncologist had me get a shingles vaccine early-on.  I told him I had read some discussions against it, but he said it was nonesense, and that it was important to get the vaccine, given how horrible, and common,  shingles development is post-lymphoma.  He was (in part)  using the US Oncology Database in his recommendation, which has over 1,000 oncologists participating.

  • allmost60
    allmost60 Member Posts: 3,178 Member
    #4
    One down...

    Hi Carie,

      Well...the first one is done and believe me the rest will go by faster than you think. I thought 2 years was going to last forever, but it didn't. I had my R infusion every other month and didn't have many problems. I remember feeling a bit punky for the first week, but perked up after that. Did your doctor tell you that stress can bring on shingles? Mine did. He also said trauma to the body and getting sick can trigger it. I've had them twice now and when I look back at the time period I broke out, I was either dealing with alot of stress, or was sick. My goal for this winter is to eat healthier and cut out stress whenever possible. Your schedule sounds stressful.....hope that isn't  what's causing your shingles to keep coming back. I use to burn the candle at both ends, but age has ended that...thank goodness! I enjoy the more layed back me. Wink Hang in there sweetie, and slow down when possible. Best wishes...Sue

    (FNHL-stg3-grd2-typA-Dx 6/10-age 63)

  • Rocquie
    Rocquie Member Posts: 869 Member
    #5
    Hi Carie

    One down and 11 to go, right? I'm getting ready for my #4 of 12. I'm not looking forward to it, but if it keeps the big bad Lymphoma wolf at bay,  then worth it.

    I'm really sorry about the shingles! I hear that stuff hurts.

    As always, it is good to hear from you. Take care of yourself.

    (((Hugs)))

    Rocquie

     

  • girliefighter
    girliefighter Member Posts: 232
    #6
    allmost60 said:

    One down...

    Hi Carie,

      Well...the first one is done and believe me the rest will go by faster than you think. I thought 2 years was going to last forever, but it didn't. I had my R infusion every other month and didn't have many problems. I remember feeling a bit punky for the first week, but perked up after that. Did your doctor tell you that stress can bring on shingles? Mine did. He also said trauma to the body and getting sick can trigger it. I've had them twice now and when I look back at the time period I broke out, I was either dealing with alot of stress, or was sick. My goal for this winter is to eat healthier and cut out stress whenever possible. Your schedule sounds stressful.....hope that isn't  what's causing your shingles to keep coming back. I use to burn the candle at both ends, but age has ended that...thank goodness! I enjoy the more layed back me. Wink Hang in there sweetie, and slow down when possible. Best wishes...Sue

    (FNHL-stg3-grd2-typA-Dx 6/10-age 63)

    shingles

    Sue,

    Yes they told me the first time I got shingles, which was right beore I was diagnosed that it was from stress, but I am unsure how to not have stress...if that makes any sense. I feel like in order to get a better job,I need to finish school; but I also have my son as my main priority. I too know about burning the candle at both ends..geesh, it gets me every time. I will trust you when you say the 2 years will go by fast, you said the treatments would cruise by and they did.Laughing Did you ever end up getting the vaccine?

    Glad to see you back and hope you enjoyed your trip

    XXXOOO

    Carie

     

  • girliefighter
    girliefighter Member Posts: 232
    #7
    Rocquie said:

    Hi Carie

    One down and 11 to go, right? I'm getting ready for my #4 of 12. I'm not looking forward to it, but if it keeps the big bad Lymphoma wolf at bay,  then worth it.

    I'm really sorry about the shingles! I hear that stuff hurts.

    As always, it is good to hear from you. Take care of yourself.

    (((Hugs)))

    Rocquie

     

    Nice to hear from you

    Rocquie,

    It is nice to hear from you....I can honestly say that I didn't count how many treatments that I have to have...lol..I think only 8...not sure though..one every 3 months for 2 years.

    I am glad to hear that things are going smoothly for you, it is always good to hear of good news on here

    keep in touch

    XXXOOO

    Carie

  • girliefighter
    girliefighter Member Posts: 232
    #8
    unknown said:

    Childs play ....

    .... Compared to chemo. Sorry about the shingles. I know it hurts as my Mom and sister had it. I took a shingles vaccine before starting therapy. Got my fingers crossed. Be sure to not touch your eyes after touching the shingles. It is a virus and in some cases can be spead. 

     

    Take care and don't overdo it.

    Shingle

    LOL...i don't want to touch anything after touching my shingles hahahaha...I wish I would have been offered the option of a vaccine beforehand.

    XXXOOO

    Carie

  • girliefighter
    girliefighter Member Posts: 232
    #9
    Max Former Hodgkins Stage 3 said:

    Shingles

    My oncologist had me get a shingles vaccine early-on.  I told him I had read some discussions against it, but he said it was nonesense, and that it was important to get the vaccine, given how horrible, and common,  shingles development is post-lymphoma.  He was (in part)  using the US Oncology Database in his recommendation, which has over 1,000 oncologists participating.

    Vaccine

    Max,

    Again, I wish I had been offered the vaccine or been told that it was an option. I am going to ask if I can have it now.

    XXXOOO

    Carie

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #10
    girliefighter said:

    Vaccine

    Max,

    Again, I wish I had been offered the vaccine or been told that it was an option. I am going to ask if I can have it now.

    XXXOOO

    Carie

    Vaccine

    Carie,

    My next door neighbor got NHL a year before I got HL. His was an extremely aggressive case, and he had to take all infusions as an inpatient.  WIthin six months of remission, he developed severe shingles, which have recurred at least once.  I believe his med was Hyper-CVAD, which is not mentioned often here. 

    He was only 35 years old, but two years later had to have both hips replaced, due to "vascular starvation" of the bone tissue there.  A very rare side-effect of his treatment.

    I cannot believe the busy schedule you maintain. I could hardly walk during treatments, and slept about 16-18 hours per day. I was not too terribly old (53 then), but had severe lung impairment during treatment, and ya can't do a lot when ya can't breath.  I thought it was Bleomycin poisioning, but my doctor said it was not that, but what he called "generalized lung toxicity." He said it would resolve, and it has, but I still cannot function without at least 9 hours of sleep a day.  This mess treats each patient differently.

    I hope you never have to deal with shingles again !

    max

  • Folks24
    Folks24 Member Posts: 106
    #11
    girliefighter said:

    Nice to hear from you

    Rocquie,

    It is nice to hear from you....I can honestly say that I didn't count how many treatments that I have to have...lol..I think only 8...not sure though..one every 3 months for 2 years.

    I am glad to hear that things are going smoothly for you, it is always good to hear of good news on here

    keep in touch

    XXXOOO

    Carie

    New Clinical Trial - Shingles Vacine

    I just had an appointment with my oncologist lately. She said there was a clinical trail going on(I'm in Eastern Iowa)  testing a special shingles vacine. The one currently on the market is live and I can't take that one.  This one they do something to the live "stuff" in the vacine so it is safe for immune compromised patients like me.

    I am thinking about taking part in the trail but wanted to let you know that a vacine for us is on the horizon.

  • jimwins
    jimwins Member Posts: 2,107
    #12
    girliefighter said:

    Nice to hear from you

    Rocquie,

    It is nice to hear from you....I can honestly say that I didn't count how many treatments that I have to have...lol..I think only 8...not sure though..one every 3 months for 2 years.

    I am glad to hear that things are going smoothly for you, it is always good to hear of good news on here

    keep in touch

    XXXOOO

    Carie

    Hey Carie

    I've been out of town for awhile and playing catch up here.  I admire you for attempting everything you are but agree with all the discussions about stress.  Try to take some time just for you to slow down and rejuevenate.  There are many good ways to deal with stress (meditation, exercise, etc.).  I know you are a "firecracker" - maybe you can work on being more of a "sparkler" and conserve some of that energy Wink.

    Hugs - Jim

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