The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 315. Re: Hi- New to the group
    jgold Registered Users
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    Mcee:

     

    Ritux, was not a problem at all, but I did have a little intestinal discomfort two days after treatment, but I cannot attribute it to Ritux at the moment.  Lets see what happens next month, as I am scheduled for CATS and blood work followed my next Ritux maint.

     

    Hair is still growing back, but I still have the bottle brush look... the top of my heads hair is standing straight up.. well leaning a bit to the right

     

    One thing thought, going back for the 6 hour infusion brought back memories of Chemo... and even though you have been told you are in remission and NED.. you cannot help feeling you still are in the grips of NHL.... but life is better and I am feeling great and looking forward to a lot of living and to my wife and my trip to the Northwest in about two months.....

     

    To all keep well and stay positive..... oh yes laugh a lot.

     

    Your friend

     

    Jim

  • 316. Re: Hi- New to the group
    mcee Registered Users
    Currently Being Moderated

    Hey Jim --

     

    I must say that Rituxan alone is entirely different than when mixed with all the CHOP stuff.

     

    I am so sleepy and really, infusion was on the 14th and here it is the 18th and I am just now waking up enough to do a few things (beyond going to work).

     

    since I still have residual gut issues, I don't see any changes there.   

     

    I have a terrible itch at the scar where they inserted my port though.  I'm watching it carefully.  The nurse who put in the needle this time really got nutso with the freeze spray.   So it might just have been a bit traumatized by all the numbing spray.    gads, little stuff but I just don't want to be all "'scuse me, my port itches" while at a meeting or something.

     

    haha.

     

    and I cannot complain, the vitamin R will do its job.  I had to pay my entire out of pocket fee this week, wow did that hurt the savings account, but now I can get all kinds of medical stuff for just a co-pay.    I am going to get an appt with a new internal med doc, and I will ask for an endo screening as well as any other things needed.   I may need to see the eye doc again, to see if my vision has been harmed too.  

     

    my hair is still sprouting.    seems darker than it was, but that might just be contrast against my scalp.   but every day, more amd more, my scalp is being covered by the growing hair.  I am sure hoping I can go without my head covers by mid-July and not get a burn. almost an inch of hair, and like you said, bottle brush effect.  heh.

     

    but all in all, spring may have finally gotten here (there is still snow in forecast, but hopefully for up north aways).    I got some weeding done and planted some hyacinth bulbs I got on sale.      slow but sure, gonna reclaim my life.

     

    be blessed!

     

    mcee

  • 317. Re: Hi- New to the group
    kcpenne Registered Users
    Currently Being Moderated

    Mcee - just wanted to say - be careful about the sun this summer, RCHOP leaves you more sensitive than usual for awhile.  My first summer, I could barely step outside without getting a burn, by the next summer, everything was fine again.

  • 318. Re: Hi- New to the group
    FRAN641 Registered Users
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    kc would the sun thing be a problem with R-CVP also or just R-CHOP?   Just wondering.

    Thanks, Fran

  • 319. Re: Hi- New to the group
    kcpenne Registered Users
    Currently Being Moderated

    Hi Fran,

     

    Sorry, I don't know which part of the cocktail causes the sun sensitivity.  I was warned by my medical team about it, and it was definitely true that first summer.

  • 320. Re: Hi- New to the group
    FRAN641 Registered Users
    Currently Being Moderated

    Thank you.  I guess I'll find out if I'm out in the sun too much.   Take care

  • 321. Re: Hi- New to the group
    mcee Registered Users
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    Hey there KC......nobody mentioned sun sensitivity.  I usually cover up anyway as I burn easily, so I am prepared already.    and wowza, do I have a 1/4 acre of work to do out there in the blazing sun this summer.

     

    I've already started.  I went and bought a new weed whacker that is a little lightweight one.    It is so much easier to work than the big one I had been using, I'll be more able to get around and be out there a bit longer.

     

    I want to get some sun however, the extra vitamin D is a good thing.   I read somewhere that a lot of lymphoma folks present with very low D levels, and I wonder if that is a factor.   Not taking any chances, no matter.

     

    be blessed!

     

    mcee

  • 322. Re: Hi- New to the group
    FRAN641 Registered Users
    Currently Being Moderated

    Jim, I believe you may know the answer to a question I have.

     

    When I have the endoscopic ultrasound and fine needle biopsy I am supposedly having "conscious sedation".  Someone told me today that her mom wasslightly sedated but wide awake during this test and it was very hard for her.  I am a card carrrying wimp and they can do whatever they want to me as long as I don't know it.  I'm waiting for the clinic that is scheduling the procedurre to call and I want to know what questions to ask to be sure they will knock me out as much as possible.  I understand that they want me breathing on my own so I can't be completley out.  Man even if I had Versed (sp?) where you don't remember what happened sounds good.  This is not being done in a hospital setting it's a Digestive Disease Center.

     

    Thanks for any info you  can share.

    Fran

  • 323. Re: Hi- New to the group
    jgold Registered Users
    Currently Being Moderated

    Fran:

     

    I am not an oncologist, my expertice is in the feild of Anesthesiology and Epidemiology but there are many different medications that can help control sedation and might be better used depending on the patient. One thing you should always do it address your concerns and I mean all your concerns with your Dr(s).

     

    There are several options for biopsy, but the less invasive is the needle biopsy with the use of ultrasound or CT scan to see exactly where the tumour is.

     

    Again, the best thing is to discuss your concerns with the Dr. that will do the biopsy, I am sure they will do everything to make you comfortable.

     

    Best of luck and hope all is well.

     

    Your friend

     

    Jim  

  • 324. Re: Hi- New to the group
    FRAN641 Registered Users
    Currently Being Moderated

    Jim,  I plan on asking all the questions I can when someone contacts me from the Center with the test schedule.

     

    The anesthesia is what I'm the most concerned about.  I want to know nothing during the procedure or at least forget it when it's over...lol

     

    The needle biopsy will be done during the ultrasound if the sample is available from that part of my intestines or stomach or something.  If I don't hear from them on Monday I will call to see how this is progressing.

     

    Thanks so much for answering.

    Fran

  • 325. Re: Hi- New to the group
    mcee Registered Users
    Currently Being Moderated

    Fran, ask for what they jokingly call "Milk of Amnesia".   it starts with a P, propofanol or something like that.  I have had Versed for colonoscopy twice, and they mix it with something else and you are aware, and a bit aware, I only once felt pain but I have a weird kink in my gut that the scope hit and they just gave me a tiny bit more and put some pressur on the area and it was ok.   I think you get Demerol alogn with the Versed, and you can actually sleep through much of stuff, but they needed to wake me up to have me roll over partially, which made me cranky.   Second run with the Versed mix was much better but that doc used a smaller scoping apparatus.

     

    my third scoping was with the "Milk of Amnesia" and I thought I was out like a light, it was the best nap I'd ever had and the best of dreams, but it wears off really fast, and wore off before the doc had all the scope out of me and *that* was a real revelation.   yeooch.    From what I have read is you are not truly anesthetized and you feel it but you don't remember a darn thing.

     

    Maybe Jim can enlighten?    and maybe it is not the right stuff for a needle biopsy and all that...but it sure was great stuff for a gut scoping.  wow.    LIke I say, felt like the best nap and was the best dreams....and my scoping doc had to burn out five pre-adenomas and I don't remember a thing but being angry that I woke out of an unfinished marvelous dream and could feel the scope being removed.

     

    hugs,

     

    mcee 

  • 326. Re: Hi- New to the group
    FRAN641 Registered Users
    Currently Being Moderated

    Thanks mcee I'll  ask about that med.   OHHHHHH waking during colonoscopy NOT GOOD....lol

     

    Fran

  • 327. Re: Hi- New to the group
    jgold Registered Users
    Currently Being Moderated

    Well, here is a new entry into may trials and tribulations.

     

    Over the course of the last three weeks, some of the symptoms I had before starting Chemo showed up again.  Talk about high anxiety and stress waiting for the next CT scan and blood work.

     

    Well the wait is over, all CT scans came back negative with no evidence of disease and in fact some of the lymph glands have actually decreased in size, and I was given the green light to have the second Rituxan maintenance yesterday as well.

     

    A new normal came back into my mind several times yesterday, as I now am much more aware of any changes I experience in my body (real or imaginary).  When talking with my Onco, he was not surprised and just reassured me all is well, and also made a comment that I will probably go through one more 4 month scan and them move to a 6 month schedule.

     

    So life returns back to my new normal and have to finish landscaping and plan a trip to the Northwest next month,

     

    Hope all of you are doing well.

     

    A warm hug to all.

     

    Jim

  • 328. Re: Hi- New to the group
    FRAN641 Registered Users
    Currently Being Moderated

    I am so glad the CT came back with good news.  This new normal stuff takes some adjustment huh?

     

    Thanks for keeping us posted on how your doing and have fun with the yard and vacation.

     

    Have you seen on here that one of the ladies called us your posse?  LOL  loved it....

     

    Fran

  • 329. Re: Hi- New to the group
    MrPat Registered Users
    Currently Being Moderated

    Wow, glad you passed the scan. I would have been sweating bullets.

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