Dropping in to say "Hi"

Almost70now
Almost70now Member Posts: 37 Member
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Hi guys. Kiss

  I haven't been on here since after we moved to Oregon in 2014...sorry Cry...I just got busy with my husbands retirement and our new location. Not a good excuse, but the truth. We decided to move back to Washington in Oct 2018 to be closer to the family. I relapsed twice while in Oregon, was treated with Rituxan and both times were successful with knocking the new tumors back. Had a mild stroke in 2016 with no permanent damage, and a couple of minor surgeries, one on my knee and one to open my pylori muscle in my stomach. All in all though I have little to complain about and just happy to still be here. I've been blessed with a second great grandson on March 2 2019 and still enjoying my sweet granddaughter Lizzy, soon to be 8, and great grandson Brenden, who just turned 6. Both pictured in my avatar. I'm happy to be home again closer to the kids and it was fun living down on the river for the time we were there. Family is just a priority for me, so the choice was easy. I will do a better job of checking in and help others in the group when I can. Hope you are having a good Saturday...beautiful weather here in Yakima. Love to all....Sue

FNHL-Grade2-stage3-typeA..in remission. Innocent

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #2
    Damit !

    Sue, this is the greatest surprise I have encountered here in a long time !!  Welcome back !

    I'm glad you are well today.  Several people here have asked publically about you here over the last few years, including me.    And a few of the other 'old times' have returned or checked in in the last few months.  So cool, changing your name from "Almost60' to 'Almost70.'

    max

     

  • illead
    illead Member Posts: 884 Member
    #3
    Ditto, Ditto, Ditto

    Yes a surprise for sure!  Like Max said you are mentioned quite often and although not said I think we all feared the worse but hoping for today.....and you made ours, that's for sure.  Glad you are healthy and with family now but sounds like you have been through a lot, we are happy you had good care and pretty much back to normal.  Bill is doing well.  He relapsed  twice in '17 mainly because he had to get off of Ibrutinib because of the side effects.  The 2nd relapse he got very sick again but we were seeing an MCL specialist at  MD Anderson in Houston who put him on a new protocol and he has been fine ever since.  Haven't told the forum yet but he got his latest Pet results last week and is still in remission.  For the first time ever he is suffering from Neulasta bone pain, 3 wks of excrutiaing femur pain and also the pet shows possible bursitis in his hip, so he has been a wreck lately but those issues will go away eventually.  We took a trip to OR in Sept to Brookings and we drove through Gasquet.  I know it's not where you were but it sure made me think of you.  We just heard from (I think it is Carol (in the kayak) and CathyP, you can find their posts in a thread a little ways down that starts  "I was last here in 2014......"  John (Cobra) also came back but alas he got dropped again, we were so happy for awhile.  Thank you so so much for updating us and we look forward to hearing from you again.  You look great, I look the same LaughingLaughing. I don't have a clue how to change my picture! I just turned 70 3 weeks ago.

    Take care and enjoy those grandkids,

    Becky

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #4
    illead said:

    Ditto, Ditto, Ditto

    Yes a surprise for sure!  Like Max said you are mentioned quite often and although not said I think we all feared the worse but hoping for today.....and you made ours, that's for sure.  Glad you are healthy and with family now but sounds like you have been through a lot, we are happy you had good care and pretty much back to normal.  Bill is doing well.  He relapsed  twice in '17 mainly because he had to get off of Ibrutinib because of the side effects.  The 2nd relapse he got very sick again but we were seeing an MCL specialist at  MD Anderson in Houston who put him on a new protocol and he has been fine ever since.  Haven't told the forum yet but he got his latest Pet results last week and is still in remission.  For the first time ever he is suffering from Neulasta bone pain, 3 wks of excrutiaing femur pain and also the pet shows possible bursitis in his hip, so he has been a wreck lately but those issues will go away eventually.  We took a trip to OR in Sept to Brookings and we drove through Gasquet.  I know it's not where you were but it sure made me think of you.  We just heard from (I think it is Carol (in the kayak) and CathyP, you can find their posts in a thread a little ways down that starts  "I was last here in 2014......"  John (Cobra) also came back but alas he got dropped again, we were so happy for awhile.  Thank you so so much for updating us and we look forward to hearing from you again.  You look great, I look the same LaughingLaughing. I don't have a clue how to change my picture! I just turned 70 3 weeks ago.

    Take care and enjoy those grandkids,

    Becky

    Bill's Pain

    Becky, the day after my first-ever Neulasta shot I was in such severe orthopedic pain that only several Loritabs made it tolerable.  My onc authorized trying 1/2  doses thereafter, and there was no recurrance of the pain.  And, the 1/2 dose kept my WBC counts well within a safe range.  Just something to ask about in Bill's case.

    max

  • illead
    illead Member Posts: 884 Member
    #5
    Good info

    Thanks Max, we see his onc tomorrow and his rituxan is on Tuesday.  He had a real bad bout with it last night.  Got up to use the bathroom and ended up on the floor.  We don't know if 3 weeks + is just the bone pain, however his onc told him his pet showed nothing in the femur and he had the scan during the pain so it's a puzzle, hope she has some answers tomorrow.

    Becky

  • Almost70now
    Almost70now Member Posts: 37 Member
    edited May 2019 #6
    Hi, Becky and Max,

    Hi, Becky and Max,

      Thank you for the welcome back. I'm happy to hear Bill is in remission and I hope soon his doctors will get his bone pain under control. I feel so fortunate not to have the bone issues. Knock on wood. Yes Max, I decided I needed to change my profile name because I'm coming up on 69 in September. Plus if I'm being honest, I changed my e-mail address and forgot my password and couldn't log in, so it was easier to just create a new account. I can't believe how fast the time has gone since 2010 when I was first diagnosed. We have lost quite a few friends during this time to various types of cancer, so every single day I count my blessings. Three weeks ago two of our closest friends have just been diagnosed, one with Breast cancer and the other with Lung, liver, kidney and brain cancer. His primary was lung cancer but it spread to all his other organs. Very sad, and we are trying hard to help them out as best we can. Anymore it seems like so many people in our age group are being diagnosed with some type of cancer. I've suggested they both join the CSN support group, but of course right now they are going through the shock of getting the news and all the chaos that you go through working up to getting a treatment in place. Well..I better get moving around here, as I have my granddaughter Lizzy and great grandson Brenden coming at 1:00 for a play date with Nana. It's a beautiful day so I'm going to take them to the park down the street from our home. Have a great Sunday. Love...Sue

    FNHL-grade2-stage3-typeA-Diagnosed 2010.(in remission)

  • EB303
    EB303 Member Posts: 22
    edited May 2019 #7
    illead said:

    Ditto, Ditto, Ditto

    Yes a surprise for sure!  Like Max said you are mentioned quite often and although not said I think we all feared the worse but hoping for today.....and you made ours, that's for sure.  Glad you are healthy and with family now but sounds like you have been through a lot, we are happy you had good care and pretty much back to normal.  Bill is doing well.  He relapsed  twice in '17 mainly because he had to get off of Ibrutinib because of the side effects.  The 2nd relapse he got very sick again but we were seeing an MCL specialist at  MD Anderson in Houston who put him on a new protocol and he has been fine ever since.  Haven't told the forum yet but he got his latest Pet results last week and is still in remission.  For the first time ever he is suffering from Neulasta bone pain, 3 wks of excrutiaing femur pain and also the pet shows possible bursitis in his hip, so he has been a wreck lately but those issues will go away eventually.  We took a trip to OR in Sept to Brookings and we drove through Gasquet.  I know it's not where you were but it sure made me think of you.  We just heard from (I think it is Carol (in the kayak) and CathyP, you can find their posts in a thread a little ways down that starts  "I was last here in 2014......"  John (Cobra) also came back but alas he got dropped again, we were so happy for awhile.  Thank you so so much for updating us and we look forward to hearing from you again.  You look great, I look the same LaughingLaughing. I don't have a clue how to change my picture! I just turned 70 3 weeks ago.

    Take care and enjoy those grandkids,

    Becky

    Claritin for Bone pain

    Hi Becky,

    You may have heard this and tried already, but my wife siffered from significant bone pain from the Neulasta shots and her Onc recommended taking Claritin. My cousin who was a Onc nurse before swicting to OB/Labor-Delivery, had seperatrely suggested it, too.  It worked pretty well for my wife. She took it day before shot, day of, and 2-3 days after.

    Hope your husband feels better soon!

  • Rocquie
    Rocquie Member Posts: 869 Member
    edited May 2019 #8
    Sue

    Sue, I am so happy to see you again! I missed you dearly. You always welcomed everyone (including myself) to the group and were so positive and kind. 

    It seems to me there are contributors here that are more interested in flaunting their "expertise" and personal experiences (whether they had to do with lymphoma or not) than actually supporting others. 

    I miss the sweetness. Now if Jim (jimwins) would just come around and offer up some of his well-placed and well-timed humor. . .

    Hugs,

    Rocquie

     

  • Almost70now
    Almost70now Member Posts: 37 Member
    edited May 2019 #9
    Rocquie said:

    Sue

    Sue, I am so happy to see you again! I missed you dearly. You always welcomed everyone (including myself) to the group and were so positive and kind. 

    It seems to me there are contributors here that are more interested in flaunting their "expertise" and personal experiences (whether they had to do with lymphoma or not) than actually supporting others. 

    I miss the sweetness. Now if Jim (jimwins) would just come around and offer up some of his well-placed and well-timed humor. . .

    Hugs,

    Rocquie

     

    Thank you!

    Hi Rocquie,

      Thank you, you are so sweet. Sorry I dropped out for awhile.When we moved to the river I had just relapsed with the cancer in my right eye and right cheek,so by the time I got treatment and all of that under control, I just needed to take a break from talking about cancer for awhile and focus on our new life on the river. I am back now, and will help as needed. Glad to see you are still hanging in there and part of the group! Love... Sue 

    FNHL-grade2-stage3-typeA (in remission)

  • merrywinner
    merrywinner Member Posts: 626 Member
    #10
    Oh my goodness!

    I can’t tell you the number of times I’ve thought of you. I too have been away for a long time but thought I’d hop on to see if anyone I knew was around and look who I found. So glad to hear you are hanging in there and doing well. I’m still in remission also.  Love, Mary

  • Almost70now
    Almost70now Member Posts: 37 Member
    #11
    merrywinner said:

    Oh my goodness!

    I can’t tell you the number of times I’ve thought of you. I too have been away for a long time but thought I’d hop on to see if anyone I knew was around and look who I found. So glad to hear you are hanging in there and doing well. I’m still in remission also.  Love, Mary

    Well, "Hello"!!!

    Hi Mary...so nice to know you are still here and doing well!!! I'm in remission also, but we are "watchful waiting" 2 tumors, one in my right paratracheal node and a small one on my left adrenal gland. So far they are stable and not growing, but still keeping a close eye on them. I've relapsed 3 times in the last 5 years, but we have been able to knock it back with radiation and Rituxan. Been doing good now since Jan.2016...(knock on wood)! Happy you checked in!  Love...Sue

    FNHL-stage3-grade2-typeA-Diagnosed June 2016. (in remission) Smile

  • illead
    illead Member Posts: 884 Member
    #12
    Almost70now said:

    Well, "Hello"!!!

    Hi Mary...so nice to know you are still here and doing well!!! I'm in remission also, but we are "watchful waiting" 2 tumors, one in my right paratracheal node and a small one on my left adrenal gland. So far they are stable and not growing, but still keeping a close eye on them. I've relapsed 3 times in the last 5 years, but we have been able to knock it back with radiation and Rituxan. Been doing good now since Jan.2016...(knock on wood)! Happy you checked in!  Love...Sue

    FNHL-stage3-grade2-typeA-Diagnosed June 2016. (in remission) Smile

    Hello also

    Yes, I remember you also, so happy to hear from you and thanks for the same picture, bet those girls are growing up.  To refresh, my husband Bill has Mantle Cell.  He is also in remission.  He relapsed twice in '17 making a total of 3 relapses but is now in remission and doing well.  He is on the target drug Revlimid and Rit maintenance and deals with some side effects but they are doable and better than the alternative....... so we'll take it!  Thanks again for the update and checking in.

    Becky

  • merrywinner
    merrywinner Member Posts: 626 Member
    #13
    illead said:

    Hello also

    Yes, I remember you also, so happy to hear from you and thanks for the same picture, bet those girls are growing up.  To refresh, my husband Bill has Mantle Cell.  He is also in remission.  He relapsed twice in '17 making a total of 3 relapses but is now in remission and doing well.  He is on the target drug Revlimid and Rit maintenance and deals with some side effects but they are doable and better than the alternative....... so we'll take it!  Thanks again for the update and checking in.

    Becky

    Hi Becky!

    I remember you too and it’s so nice to hear from you. I’m also happy to hear that your husband is hanging in there and continues to achieve remission. 

    Yes those girls are getting so big. In fact they will be 9 tomorrow! I feel blessed every day to be able to be here for it. 

    I am thankfullay still in remission without a recurrence. It has been 9 years. 

    Wishing you and your husband continued success. Mary

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