Lymphoma Newbie

2

Comments

  • MattButts
    MattButts Member Posts: 37
    Better This Time

    I must be doing something right this time. Two days out from my latest treatment, my mouth doesn't taste like a car battery yet. Had a very busy week. Two visits just for IV fluids because I was dehydrated, and a full blown blood transfusion yesterday. Maybe that's what's ameliorating the side effects?

    I've also had a problem with muscie weakness, especially in my legs. A few "I've-fallen-and-I-can't-get-up" moments. Thankfully, my roommate has been acting as my guardian angel, but I needed more help around the house, so they issued me a really nice walker that even has a seat where I can sit and work at the kitchen counter. (I can cook; my roommate, alas, cannot.)

  • MattButts said:

    Better This Time

    I must be doing something right this time. Two days out from my latest treatment, my mouth doesn't taste like a car battery yet. Had a very busy week. Two visits just for IV fluids because I was dehydrated, and a full blown blood transfusion yesterday. Maybe that's what's ameliorating the side effects?

    I've also had a problem with muscie weakness, especially in my legs. A few "I've-fallen-and-I-can't-get-up" moments. Thankfully, my roommate has been acting as my guardian angel, but I needed more help around the house, so they issued me a really nice walker that even has a seat where I can sit and work at the kitchen counter. (I can cook; my roommate, alas, cannot.)

    Fluids

    For sure dehydration is a major threat. Try to drink a lot of fluids! Good luck friend!

  • jimwins
    jimwins Member Posts: 2,107
    MattButts said:

    Better This Time

    I must be doing something right this time. Two days out from my latest treatment, my mouth doesn't taste like a car battery yet. Had a very busy week. Two visits just for IV fluids because I was dehydrated, and a full blown blood transfusion yesterday. Maybe that's what's ameliorating the side effects?

    I've also had a problem with muscie weakness, especially in my legs. A few "I've-fallen-and-I-can't-get-up" moments. Thankfully, my roommate has been acting as my guardian angel, but I needed more help around the house, so they issued me a really nice walker that even has a seat where I can sit and work at the kitchen counter. (I can cook; my roommate, alas, cannot.)

    Hi Matt

    Glad you're doing better this time!  I'm sure the hydration and transfusion have helped. I'm glad you have someone there to help you out.  

    Thanks for the update and hope things keep improving buddy.

     

  • MattButts
    MattButts Member Posts: 37
    Has This Happened To You?

    Here's a rather annoying symptom I've been having: hiccups... intractible, rapid-fire hiccups that are more like diaphragm spasms. Of course, it gets me a zillion suggested hiccup cures. Is this what they meant by lung toxicity from the chemo? (I forget which one.)

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

    Has This Happened To You?

    Here's a rather annoying symptom I've been having: hiccups... intractible, rapid-fire hiccups that are more like diaphragm spasms. Of course, it gets me a zillion suggested hiccup cures. Is this what they meant by lung toxicity from the chemo? (I forget which one.)

    Hiccups
    Matt,

    I studied Bleomycin Toxicity pretty extensively, and to my knowledge, hiccups are not related to that condition. The main symptoms of toxicity are severe, unending cough, and shortness of breath.

    A nurse with a trash bag filled with water and a garden hose, showing up and saying, Mr Butts ! Your next infusion !" might scare them out of you .... ;)

    max
  • Shoopy
    Shoopy Member Posts: 210
    MattButts said:

    Has This Happened To You?

    Here's a rather annoying symptom I've been having: hiccups... intractible, rapid-fire hiccups that are more like diaphragm spasms. Of course, it gets me a zillion suggested hiccup cures. Is this what they meant by lung toxicity from the chemo? (I forget which one.)

    Hiccups

    I remember having uncontrollable hiccups and diaphragm spasms after my R-DHAC treatments.  I still get the spasms sometimes.  Unfortunately, I couldn't figure out how to make the less of an PITA.

    Karl 

  • MattButts
    MattButts Member Posts: 37
    It's been a while…

    … since I posted here, so I should drop a quick note and let everyone know I'm still okay. More than okay, I'm getting better and better. After my hospitalization in April, they took the B out of my ABVD regimen and scaled back the dosage on the A, V and D. Side effects have been minimal and my weight is coming back up … +30 lbs since April. My strength is returning and my hair has even started growing back (or trying to, as I've decided I like the look so I'm keeping my head shaved. About the worst problem I have is that now and then the lymph nodes in my back start complaining… the other day I was having back spasms so bad I probably woke the neighbors with my screaming, but it responded well to the pain killers and I felt fine the next day.

    I'm two-thirds of the way through chemo (last treatment will be Sept. 30th). We'll find out more when I have my next PET scan on Sept. 15th.

     

  • jimwins
    jimwins Member Posts: 2,107
    MattButts said:

    It's been a while…

    … since I posted here, so I should drop a quick note and let everyone know I'm still okay. More than okay, I'm getting better and better. After my hospitalization in April, they took the B out of my ABVD regimen and scaled back the dosage on the A, V and D. Side effects have been minimal and my weight is coming back up … +30 lbs since April. My strength is returning and my hair has even started growing back (or trying to, as I've decided I like the look so I'm keeping my head shaved. About the worst problem I have is that now and then the lymph nodes in my back start complaining… the other day I was having back spasms so bad I probably woke the neighbors with my screaming, but it responded well to the pain killers and I felt fine the next day.

    I'm two-thirds of the way through chemo (last treatment will be Sept. 30th). We'll find out more when I have my next PET scan on Sept. 15th.

     

    So glad to hear from you!

    Hi Matt!  It's wonderful to hear from you and that things are better.  I'm happy to hear you're gaining weight and strength - good signs I think.

    Keep getting better and good luck on your scans on the 15th.  Please write when you can or feel up to it.  Again, I can't tell you how good it was to hear from you.  It made my day.

    Hugs,

    Jim

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

    It's been a while…

    … since I posted here, so I should drop a quick note and let everyone know I'm still okay. More than okay, I'm getting better and better. After my hospitalization in April, they took the B out of my ABVD regimen and scaled back the dosage on the A, V and D. Side effects have been minimal and my weight is coming back up … +30 lbs since April. My strength is returning and my hair has even started growing back (or trying to, as I've decided I like the look so I'm keeping my head shaved. About the worst problem I have is that now and then the lymph nodes in my back start complaining… the other day I was having back spasms so bad I probably woke the neighbors with my screaming, but it responded well to the pain killers and I felt fine the next day.

    I'm two-thirds of the way through chemo (last treatment will be Sept. 30th). We'll find out more when I have my next PET scan on Sept. 15th.

     

    Thanks

    I very much appreciate you checking in Matt, as I am sure many here do also.  I am also delighted that the meds seems to be working and that you have regained some of the weight loss.  Please do continue to write. 

    max

  • allmost60
    allmost60 Member Posts: 3,178 Member
    MattButts said:

    It's been a while…

    … since I posted here, so I should drop a quick note and let everyone know I'm still okay. More than okay, I'm getting better and better. After my hospitalization in April, they took the B out of my ABVD regimen and scaled back the dosage on the A, V and D. Side effects have been minimal and my weight is coming back up … +30 lbs since April. My strength is returning and my hair has even started growing back (or trying to, as I've decided I like the look so I'm keeping my head shaved. About the worst problem I have is that now and then the lymph nodes in my back start complaining… the other day I was having back spasms so bad I probably woke the neighbors with my screaming, but it responded well to the pain killers and I felt fine the next day.

    I'm two-thirds of the way through chemo (last treatment will be Sept. 30th). We'll find out more when I have my next PET scan on Sept. 15th.

     

    Thanks...

    Hi Matt,

      Thanks so much for checking in. I have thought about you many times and prayed you were ok. Your wieght loss had me very worried, but I'm so happy to hear you are gaining it back! You will finish your chemo on my birthday.."yeah"....I will double celebrate for both of us. By the way..I finally convinced my hubby to buzz his hair and now he loves it and say's he won't ever grow his out again. You take care and check in when possible. Keep up the good progress. Sue

    (Follicular NHL-stg3-grd2-typA-Dx 6/10-age 63. Relapsed in April 2014..right eye, right cheek and right paratracheal node. Radiation completed on the eye and it is doing great. Doing watchful waiting for cheek and chest. New scans mid September. Smile 

  • illead
    illead Member Posts: 884 Member
    allmost60 said:

    Thanks...

    Hi Matt,

      Thanks so much for checking in. I have thought about you many times and prayed you were ok. Your wieght loss had me very worried, but I'm so happy to hear you are gaining it back! You will finish your chemo on my birthday.."yeah"....I will double celebrate for both of us. By the way..I finally convinced my hubby to buzz his hair and now he loves it and say's he won't ever grow his out again. You take care and check in when possible. Keep up the good progress. Sue

    (Follicular NHL-stg3-grd2-typA-Dx 6/10-age 63. Relapsed in April 2014..right eye, right cheek and right paratracheal node. Radiation completed on the eye and it is doing great. Doing watchful waiting for cheek and chest. New scans mid September. Smile 

    So glad

    I too, have been worried.  We have mentioned from time to time that we were concerned about you so we sure appreciate the good news.  What a relief.  So glad the weight is coming back on.  Wish I could give you some Laughing.  Please let us know how your scan turns out.

    Wishing you continued improvement, Becky

     

  • MattButts
    MattButts Member Posts: 37
    Update

    Just thought I'd pop in with the latest update. On Monday (World Lymphoma Day, as it happens) I had my latest PET scan. The next day my oncologist reviewed the results with me, even comparing it side-by-side with my original scan from February. The difference was dramatic. The latest scan is clear, showing no evidence of active cancer. Just one tiny little spot she thinks is scar tissue from a broken rib. (I did have a broken rib in 2009, so I tend to agree.) WOO HOO!!!

    I love getting good news… ’specially from my oncologist!

    Matt!

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

    Update

    Just thought I'd pop in with the latest update. On Monday (World Lymphoma Day, as it happens) I had my latest PET scan. The next day my oncologist reviewed the results with me, even comparing it side-by-side with my original scan from February. The difference was dramatic. The latest scan is clear, showing no evidence of active cancer. Just one tiny little spot she thinks is scar tissue from a broken rib. (I did have a broken rib in 2009, so I tend to agree.) WOO HOO!!!

    I love getting good news… ’specially from my oncologist!

    Matt!

    Fantastic !

    Absolutely fantastic, Matt ! I honestly was thinking of you yesterday.  I know you were in a rough way there for a time, during all of that weight loss.

    I know all here appreciate your news,

    max

  • Jeff148
    Jeff148 Member Posts: 184
    Awesome!!

    Been thinking about and praying fo you too. I'm so glad for you! Hope you have been playing your instrument with your group!! Music is healing physically and sprititually.

  • jimwins
    jimwins Member Posts: 2,107
    MattButts said:

    Update

    Just thought I'd pop in with the latest update. On Monday (World Lymphoma Day, as it happens) I had my latest PET scan. The next day my oncologist reviewed the results with me, even comparing it side-by-side with my original scan from February. The difference was dramatic. The latest scan is clear, showing no evidence of active cancer. Just one tiny little spot she thinks is scar tissue from a broken rib. (I did have a broken rib in 2009, so I tend to agree.) WOO HOO!!!

    I love getting good news… ’specially from my oncologist!

    Matt!

    Yoo hoo!

    Thanks for making my day, Matt! That is great news.  Keep on getting and sharing good news, buddy1

    Jim

  • MattButts
    MattButts Member Posts: 37

    Fantastic !

    Absolutely fantastic, Matt ! I honestly was thinking of you yesterday.  I know you were in a rough way there for a time, during all of that weight loss.

    I know all here appreciate your news,

    max

    Weight

    Since being hospitalized, I've gained 35 lbs. That's almost a 40% increase! You can see it in my face (wish I had before and after pics) … I've gone from a sunken, skeletal face to having chipmunk cheeks, and I don't mind a bit.

  • allmost60
    allmost60 Member Posts: 3,178 Member
    MattButts said:

    Update

    Just thought I'd pop in with the latest update. On Monday (World Lymphoma Day, as it happens) I had my latest PET scan. The next day my oncologist reviewed the results with me, even comparing it side-by-side with my original scan from February. The difference was dramatic. The latest scan is clear, showing no evidence of active cancer. Just one tiny little spot she thinks is scar tissue from a broken rib. (I did have a broken rib in 2009, so I tend to agree.) WOO HOO!!!

    I love getting good news… ’specially from my oncologist!

    Matt!

    Awesome...

    Hi Matt,

     "AWESOME" news!!!! I'm so very happy for you! Good to hear your gaining weight and getting better with each day. Hang in there andyou have my prayers for continued progress and healthy days! Thanks for sharing.

    Best wishes...Sue

  • illead
    illead Member Posts: 884 Member
    Jeff148 said:

    Awesome!!

    Been thinking about and praying fo you too. I'm so glad for you! Hope you have been playing your instrument with your group!! Music is healing physically and sprititually.

    Ditto on awesome

    That is the greatest, know what a relief it is (heard that before somewhere) Wink.

    Wishing you continued good health, Bill & Becky

  • MattButts said:

    Weight

    Since being hospitalized, I've gained 35 lbs. That's almost a 40% increase! You can see it in my face (wish I had before and after pics) … I've gone from a sunken, skeletal face to having chipmunk cheeks, and I don't mind a bit.

    I'm very happy for you Matt!

    I'm very happy for you Matt! Here I am complaining about not losing weight after pregnancy when worse can happen, like losing too much weight. I love hearing good news and I hope there will be only good news for you from now on.

     

    All the best! ;)

  • Folks24
    Folks24 Member Posts: 106
    illead said:

    Ditto on awesome

    That is the greatest, know what a relief it is (heard that before somewhere) Wink.

    Wishing you continued good health, Bill & Becky

    Lymphoma

    Congrads on your latest PET scan. I am an NHL survivor of 2 years.

    I had very bad mouth sores for awhile on chemo & dr said due to white cell count. Looked like big blood drops in my mouth.

    But the thing I remember most, is after my 1st c chemo treatment I had this funny smell that I went crazy trying to find out what is was around the house. The oncologist finally told me the strange smells sometimes come with the chemo.    The best I can describe the smell is Maple Syrup Hot Dogs.  To this day, I'm not much into either one of those.