NHL FOLLICULLAR AT 60

2»

Comments

  • kayebadoe
    kayebadoe Member Posts: 81
    #22
    COBRA666 said:

    AT LEAST YOURS WAITED
    At least your tx waited till the 7th round to kick your butt. Mine kicked mine on round 1. I am getting R-CVP. It was a week ago today I started my 1st round and am just now starting to feel a little more peppy.

    My first chemo
    also kicked my butt. After the steroids stopped I just fell apart. Sores in my mouth, no taste, then metal taste. I couldn't get out of bed for about 5 days. Gradually I got better and I could taste again. I'd say almost normal just in time for next round. I had acuppunture this time and I'd say I was closer to normal the whole 3 weeks. Now this week is my 3rd round. We will just see how this one goes. I am interested to see what my CBC is. Oh and I'm gonna get acupunture again.I've had amazing amount of energy this time thru.
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #23
    onlytoday said:

    Thanks for the update
    Glad that your blood and kidneys checked out okay. But sorry you're not feeling so great. Are you able to rest enough and are you walking every day? I really hope you can get some energy back and that the abdomin pain gets better.

    I do still have the abdomin pain,my doctor aware. Today I had my left inginual lymph node removed for staging of my lymphoma. I next see my doc on July 7 to see what all the ct test, pet scan, bone marrow biopsy and todays surgery show. Then she'll tell me what the plan is. I then have a second opinion visit the next day!

    Ironically I was supposed to begin a 2 week vacation that Saturday the 10th. Right now all is on hold. I signed up for Intermittent FML due to the amount of time I've been taking off lately. That way atleast I can save my vacation time for later, when I hopefully feel better.

    I have a new symptom on my neck. There are a couple of good sized tumors there and they are possibly pressing on something and causing stiff necks and discomfort. I'll talk to her ab out it when I see her.

    How soon after your diagnosis and staging did they start your treatment?


    Take care, great to hear from you with an update. Sending good thoughts and prayers your way.

    UPDATE
    I was diagnosed in April and said it was probably stage 2. They kept waiting and watching and finally decided to do a bone marrow biopsy. That was a thrill beyond compare. It did not hurt but the pressure was terrible. Believe me I ain't nobodys hero. They said it was in the bone marrow,but not that much. Still in there though. 2 weeks later I had a porta cath put in and the next week I started R-CVP on June 2nd for 6 rounds. Been feeling a lot better the past 2-3 days. Enery coming back and pain just about gone. The first 10-14 days after the chemo I felt like I had been beat up and dragged off and on in that time. Go back on July 7th to have round 2. Hope I don't have to go thru all those ups and downs again. Everyone is different so we shall see. The really hard part is the waiting to see what each day will bring. You do learn that it will get better as time goes on. The people on this site become your leaning post and crutches that help hold you up at times. They will be here for you whenever you need them. Keep us posted, John
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    #24
    kayebadoe said:

    My first chemo
    also kicked my butt. After the steroids stopped I just fell apart. Sores in my mouth, no taste, then metal taste. I couldn't get out of bed for about 5 days. Gradually I got better and I could taste again. I'd say almost normal just in time for next round. I had acuppunture this time and I'd say I was closer to normal the whole 3 weeks. Now this week is my 3rd round. We will just see how this one goes. I am interested to see what my CBC is. Oh and I'm gonna get acupunture again.I've had amazing amount of energy this time thru.

    Wonderful
    Kaye,

    Glad to hear the acupuncture is helping. I was amazed at the difference too. Should I ever need chemo again, I'll be waiting in line LOL.

    Take Care,
    Beth
  • Richsterr
    Richsterr Member Posts: 34 Member
    #25
    Yes I have the same
    I am on my sixth chemo on Monday. I have loads of questions also Dont know how to navigate around here.

    Richard
  • Richsterr
    Richsterr Member Posts: 34 Member
    #26
    hilde451 said:

    diagnosed at 60
    I was diagnosed at 60 and had surgery in 04, then did 20 Radiation treatments. Was home free almost 5 years.
    At which time last April in 09, I relapsed. And it turned up in my bone marrow. Was told I had stage 4.
    Then did 8 rounds of R-chop and two treatments of Rituxan and then Zevalin December 23. It has been a long haul. But just did my Cat scan and it turned out well, I am doing pretty well, have some issues with sore muscles. But that is about all.
    I wish you well, best wishes. Hope you let us here know how you are doing. Hilde

    Hey
    I have pretty much the same thing you have. Did 5 rounds so far of chemo. Would like to talk to you. E mail me at rilevy@windstream.net Would love to hear from you. Have many questions to ask.

    Richard
  • cookingirl
    cookingirl Member Posts: 183 Member
    #27
    NHL Follicular at 60
    67 year old female - NHL, B cell, follicular, stage 4. Watchful waiting since 9/09, large abdominal tumor grew from 3cm to 12 in May, started Rituxon - CVP. Have had 4 Chemos, 2 to go. CT scan after 3 treatments showed about a 40% shrinkage but my ab is still very swollen and extended - looks even bigger to me. Some fatigue but not as much as I expected. Dr. had said I wouldn't lose my hair but not true - it's about 3/4 gone and I should stop hiding it under wigs and caps and just get rid of it. Not feeling as well as I thought I would after 4 chemos - bad back and ab pain many days. God bless us all with HNL and we'll try to keep a positive attitude as we stay more isolated than I'd like with a weakened Immune system!
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #28
    cookingirl said:

    NHL Follicular at 60
    67 year old female - NHL, B cell, follicular, stage 4. Watchful waiting since 9/09, large abdominal tumor grew from 3cm to 12 in May, started Rituxon - CVP. Have had 4 Chemos, 2 to go. CT scan after 3 treatments showed about a 40% shrinkage but my ab is still very swollen and extended - looks even bigger to me. Some fatigue but not as much as I expected. Dr. had said I wouldn't lose my hair but not true - it's about 3/4 gone and I should stop hiding it under wigs and caps and just get rid of it. Not feeling as well as I thought I would after 4 chemos - bad back and ab pain many days. God bless us all with HNL and we'll try to keep a positive attitude as we stay more isolated than I'd like with a weakened Immune system!

    cookingirl
    God bless you too! So many in treatment right now that hearing what all of you are going through will certainly help me next week when I start round one. I will keep you in my daily prayers and think positive thoughts that your ab and back pain will go away soon. I just hate to hear when people are hurting...makes one feel helpless in helping them through it. Come back here and talk when you feel strong...we may get isolated from time to time..(keeping away from germs and all),BUT... we can always talk here!!! "YES" God bless you...
    Love...Sue
  • cookingirl
    cookingirl Member Posts: 183 Member
    #29
    allmost60 said:

    cookingirl
    God bless you too! So many in treatment right now that hearing what all of you are going through will certainly help me next week when I start round one. I will keep you in my daily prayers and think positive thoughts that your ab and back pain will go away soon. I just hate to hear when people are hurting...makes one feel helpless in helping them through it. Come back here and talk when you feel strong...we may get isolated from time to time..(keeping away from germs and all),BUT... we can always talk here!!! "YES" God bless you...
    Love...Sue

    NHL Follicullar at 60
    Hi Sue - thanks so much for your words of support. I have met only one NHL patient in FL so this is a great source of help for me since finding an online group. How long have you had cancer and do you know which type of Chemo you'll be starting? I hope your sleep isn't interrupted like mine - the Prednisone in CVP even two weeks after taking and before the next cycle begins lets me sleep only 3 hours a night max. That's with prescription sleeping pills from my Oncologist! Getting weary and thinking of checking out Acupuncture to see if it could help. Haven't done any alternative treatments and my hubby thinks I shouldn't until Chemo is over. Good luck with your treatment and I'll be praying for you as well -
  • kayebadoe
    kayebadoe Member Posts: 81
    #30
    cookingirl said:

    NHL Follicullar at 60
    Hi Sue - thanks so much for your words of support. I have met only one NHL patient in FL so this is a great source of help for me since finding an online group. How long have you had cancer and do you know which type of Chemo you'll be starting? I hope your sleep isn't interrupted like mine - the Prednisone in CVP even two weeks after taking and before the next cycle begins lets me sleep only 3 hours a night max. That's with prescription sleeping pills from my Oncologist! Getting weary and thinking of checking out Acupuncture to see if it could help. Haven't done any alternative treatments and my hubby thinks I shouldn't until Chemo is over. Good luck with your treatment and I'll be praying for you as well -

    Acupuncture
    Has saved me. Especially with fatigue. I have energy before I get up off of the table. Please don't wait to try it.
  • hilde451
    hilde451 Member Posts: 229 Member
    #31
    markstevenvegas said:

    Hi Hilde
    My name is Mark. I just read this string of posts and saw that you had radiation therapy. I'm assuming your radiation was to treat your neck since that was the site of the surgery? I finished R-CHOP the end of April and began 15 rounds of radiation to my neck at a dosage of 3000 cGY the end of May. I just finished a couple weeks ago. The radiation in the neck region was brutal to say the least. My questions for you....I am without any taste buds and only 25% of my saliva. I'm told it will come back in a couple months. How long did it take your taste buds and saliva to return. It's very agonizing that everything tastes like eating cardboard. I have yet to meet/talk to anyone that had radiation to the neck. FYI, my dx was Dec. 09' B-cell Follicular NHL Stage II Grade III Thanks. Mark

    Hi markstevenvegas
    Hope this finds you doing well. Sorry I had not seen your post. I am sure by now you should have your taste buds back.
    I had mine back in a few months after radiation which was in 04 when I did 20 treatments to my neck and cheek. Then I was home free for 5 years almost.
    I was diagnosed with follicular NHL, stage 4. Did 8 chemo treatments last year and did a radioactive treatment called Zevalin in Dec. So the lingering effects of all the treatments makes you wonder .
    I go back Sept. 1st. So will see what is going on.
    Hope you are doing well.
    Hilde
  • truckingalong
    truckingalong Member Posts: 445 Member
    #32
    kayebadoe said:

    Acupuncture
    Has saved me. Especially with fatigue. I have energy before I get up off of the table. Please don't wait to try it.

    Acupuncture
    How do you find an acupunturist? Is there a specific kind of one or use a general acupunturist? When do you go for this service - inbetween treatments or right after treatment? I had used homeopathy remedies in the past for general ailments and liked them but not recently nor this area.

    Thanks,
    Liz
  • JoanieP
    JoanieP Member Posts: 573
    #33
    cookingirl said:

    NHL Follicular at 60
    67 year old female - NHL, B cell, follicular, stage 4. Watchful waiting since 9/09, large abdominal tumor grew from 3cm to 12 in May, started Rituxon - CVP. Have had 4 Chemos, 2 to go. CT scan after 3 treatments showed about a 40% shrinkage but my ab is still very swollen and extended - looks even bigger to me. Some fatigue but not as much as I expected. Dr. had said I wouldn't lose my hair but not true - it's about 3/4 gone and I should stop hiding it under wigs and caps and just get rid of it. Not feeling as well as I thought I would after 4 chemos - bad back and ab pain many days. God bless us all with HNL and we'll try to keep a positive attitude as we stay more isolated than I'd like with a weakened Immune system!

    Cooking irl
    I sure would like to hear how you are doing. I haven't gotten an e-mail lately from your husband. Hope you are feeling better. You are in my prayers Joanie
  • kayebadoe
    kayebadoe Member Posts: 81
    #34
    truckingalong said:

    Acupuncture
    How do you find an acupunturist? Is there a specific kind of one or use a general acupunturist? When do you go for this service - inbetween treatments or right after treatment? I had used homeopathy remedies in the past for general ailments and liked them but not recently nor this area.

    Thanks,
    Liz

    Acctually
    Go to google and search accupunture then add your city. I go to a school here in Tucson and I get my treatments for $20. each. I have them twice a week. At first I only went a couple of times a month. As I had more chemo's I went to twice a week. Its what has gotten me thru this ordeal.
  • Richsterr
    Richsterr Member Posts: 34 Member
    #35
    cookingirl said:

    NHL Follicullar at 60
    Hi Sue - thanks so much for your words of support. I have met only one NHL patient in FL so this is a great source of help for me since finding an online group. How long have you had cancer and do you know which type of Chemo you'll be starting? I hope your sleep isn't interrupted like mine - the Prednisone in CVP even two weeks after taking and before the next cycle begins lets me sleep only 3 hours a night max. That's with prescription sleeping pills from my Oncologist! Getting weary and thinking of checking out Acupuncture to see if it could help. Haven't done any alternative treatments and my hubby thinks I shouldn't until Chemo is over. Good luck with your treatment and I'll be praying for you as well -

    Follicullar also at 62
    Hi I am on my sixth chemo . Scan was good I am also from Florida. Tallahassee. Love to chat with you.

    Richard
  • KC13167
    KC13167 Member Posts: 215
    #36
    kayebadoe said:

    Acctually
    Go to google and search accupunture then add your city. I go to a school here in Tucson and I get my treatments for $20. each. I have them twice a week. At first I only went a couple of times a month. As I had more chemo's I went to twice a week. Its what has gotten me thru this ordeal.

    Accupuncture
    Wow, Twenty bucks!!! Can't beat it. I live in upstate NY where a friend of mine pays $68.00 for each treatment. He claims it works well.
  • truckingalong
    truckingalong Member Posts: 445 Member
    #37
    kayebadoe said:

    Acctually
    Go to google and search accupunture then add your city. I go to a school here in Tucson and I get my treatments for $20. each. I have them twice a week. At first I only went a couple of times a month. As I had more chemo's I went to twice a week. Its what has gotten me thru this ordeal.

    Accupunture
    Great - thanks for the tips!!
  • cookingirl
    cookingirl Member Posts: 183 Member
    #38
    JoanieP said:

    Cooking irl
    I sure would like to hear how you are doing. I haven't gotten an e-mail lately from your husband. Hope you are feeling better. You are in my prayers Joanie

    NHL Follicullar at 60
    Hi Joanie - I thought I'd get to call you over the summer, but it's been crazy. I just found your email so I'm going to write you now on that - thanks for checking in! Fondly, Fran

Discussion Boards