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  • bob13440
    bob13440 Member Posts: 66
    #102
    Fayard said:

    My father in law, who battled

    My father in law, who battled with prostate cancer for over 10 years, told the following: When you come back from chemo, DO NOT go to bed immediately. Go for a short walk. You are going to feel very tire sometimes, but just do it.

    I did it every time. Hopefully Lorraine will have the energy to do it as well. You guys are in my prayers!

    chemo question

    Lorraine begins chemo tomorrow, mixed emotions, but ready to go. While we are optimistic and have much faith in her medical care team, she wonders what happens after all her treatments are done. How long after her final treatment will they know if she's in remission? What happens if she isn't? Do they start more rounds? I hope these questions don't sound to ignorant.

  • Ro10
    Ro10 Member Posts: 1,561 Member
    #103
    bob13440 said:

    chemo question

    Lorraine begins chemo tomorrow, mixed emotions, but ready to go. While we are optimistic and have much faith in her medical care team, she wonders what happens after all her treatments are done. How long after her final treatment will they know if she's in remission? What happens if she isn't? Do they start more rounds? I hope these questions don't sound to ignorant.

    Bob and Lorraine

    I hope Lorraine does well with her first chemo.  Everyone is different.  We were all anxious before our treatment.   But most of us did not think it was as bad as we anticipated it to be.  I feared nausea the most, but they give such good anti nausea meds.  

    Are her treatments weekly or every three weeks?  I think you mentioned before they would be weekly.  Usually the CA-125 is followed during the treatments.  Hopefully the marker will drop if it was elevated.   I never had the CA-125 done until my second chemo.   They did not suspect UPSC and the doctor said the surgery would elevate it.  Do you know yet what her chemo drugs will be?

    then when chemo is finished a CAT scan or PET scan is done to see if there is any evidence od disease.

    Did you ever find out what stage Lorraine is.  Usually you don't find out  the stage until the pathology report comes back after surgery.

    if Lorraine is going to get a Neulasta shot to help her white blood cells, taking Claritin before the shot and days after the shot will help with the bone pain.  Try to keep ahead of constipation which can occur with chemo.  Try to keep the fluids going.

    I have never been in remission so there will always be treatment for me in the future.   I just take it a day at a time and. Enjoy the time between treatments.

    there are no ignorant questions.  Ask away when you have a question.  Take it a day at a time.  Good luck to both of you.  You might want to start a new thread as this one is getting long.   Let us know how everything goes tomorrow.  In peace and caring.

  • bob13440
    bob13440 Member Posts: 66
    #104
    Ro10 said:

    Bob and Lorraine

    I hope Lorraine does well with her first chemo.  Everyone is different.  We were all anxious before our treatment.   But most of us did not think it was as bad as we anticipated it to be.  I feared nausea the most, but they give such good anti nausea meds.  

    Are her treatments weekly or every three weeks?  I think you mentioned before they would be weekly.  Usually the CA-125 is followed during the treatments.  Hopefully the marker will drop if it was elevated.   I never had the CA-125 done until my second chemo.   They did not suspect UPSC and the doctor said the surgery would elevate it.  Do you know yet what her chemo drugs will be?

    then when chemo is finished a CAT scan or PET scan is done to see if there is any evidence od disease.

    Did you ever find out what stage Lorraine is.  Usually you don't find out  the stage until the pathology report comes back after surgery.

    if Lorraine is going to get a Neulasta shot to help her white blood cells, taking Claritin before the shot and days after the shot will help with the bone pain.  Try to keep ahead of constipation which can occur with chemo.  Try to keep the fluids going.

    I have never been in remission so there will always be treatment for me in the future.   I just take it a day at a time and. Enjoy the time between treatments.

    there are no ignorant questions.  Ask away when you have a question.  Take it a day at a time.  Good luck to both of you.  You might want to start a new thread as this one is getting long.   Let us know how everything goes tomorrow.  In peace and caring.

    Ro

    thanks for the advice and info. Lorraine is stage 3 and she is having weekly treatments. Seems like such a short period of recovery time between rounds, but they want to be agressive. Never been in remission? When were you duagnosed? How long is it for you between treatments and is there ever a chance for remission for you? You are very inspiring to us. Thanks for making us feel comfortable asking questions.

  • Fayard
    Fayard Member Posts: 438 Member
    #105
    bob13440 said:

    Ro

    thanks for the advice and info. Lorraine is stage 3 and she is having weekly treatments. Seems like such a short period of recovery time between rounds, but they want to be agressive. Never been in remission? When were you duagnosed? How long is it for you between treatments and is there ever a chance for remission for you? You are very inspiring to us. Thanks for making us feel comfortable asking questions.

    Bob, as Ro said the

    Bob, as Ro said the anti-naucea medication is effective, Ask Lorraine to take it every morning, before symptoms arrive. I never knew what naucea was, because I took my pill every morning for 6 months. To help with constipation, add grinded flax seeds to her drinks, and of course to second Ro LOT OF WATER! :)

    Keep us posted!

  • AWK
    AWK Member Posts: 364 Member
    #106
    bob13440 said:

    Ro

    thanks for the advice and info. Lorraine is stage 3 and she is having weekly treatments. Seems like such a short period of recovery time between rounds, but they want to be agressive. Never been in remission? When were you duagnosed? How long is it for you between treatments and is there ever a chance for remission for you? You are very inspiring to us. Thanks for making us feel comfortable asking questions.

    It all fair game here!

    I echo Ro wholeheartedly.  Hydrate, walk (during treatment even) and rest.  Try to have a routine of some sorts even if it is simple as waking up at the same time each day for a couple of hours.  That helps so much.  Everything that happens is temporary so keep that in mind too.

    In terms of recurrence like Ro I have never been NED.  I just progressed through different types of chemos and am now on a non chemo treatment called Avastin which is keeping me stable - no new growths in six months and no shrinking either.  My first CT scan caught the new tumors and also like Ro I will be in treatment for the rest of my life, which I intend to be a long long time.  I am doing well, working full time, riding horses and having my treatments every three weeks.  I get tired but that is when I push myself to move around and then I start to feel better.

    in looking back, I am glad I never looked that far ahead and just stayed focused on being open to my experience, letting the meds do their thing and celebrating after each treatment in one form or another.  I was on medical leave for nine months.  Just try to focus on the immediate and assume everything will be okay, let yourselves have those bad and scared days too but keep moving forward.  She can do this and so can you.  I have had amazing experiences because of my cancer and I never want to lose site of that.  

    Sending hugs.  Anne

  • Ro10
    Ro10 Member Posts: 1,561 Member
    #107
    bob13440 said:

    Ro

    thanks for the advice and info. Lorraine is stage 3 and she is having weekly treatments. Seems like such a short period of recovery time between rounds, but they want to be agressive. Never been in remission? When were you duagnosed? How long is it for you between treatments and is there ever a chance for remission for you? You are very inspiring to us. Thanks for making us feel comfortable asking questions.

    Bob and Lorraine

    i was diagnosed with Stage 3-C in January 09.  I had the sandwich treatment with 3 chemo ( 3 weeks apart ), then 28 external radiation, followed bt a 28 hour internal radiation, then 3 more chemo treatments.   I had 18 months before I had 7 more treatments (3 weeks apart).  Then I only had 7 months before I needed 6 more chemo treatments.  My last chemo was 5/12.  I have been on Aromasin pill which slows the Cancer growth.   I had an enlarged lymph node close to my trachea which I had 10 SBRT treatments to in 9/14.   

    When I was diagnosed I was told the Cancer was not curable, but treatable.  So for 6 years I have been treating and expect more chemo in the future.   I enjoy my time between treatments and try to find joy in every day.  I have a wonderful supportive husband, just as you are supporting Lorraine.  It is so important for us, but k ow how difficult it is for you, too.

    good luck to both of you.  In peace and caring.

  • bob13440
    bob13440 Member Posts: 66
    #108
    Ro10 said:

    Bob and Lorraine

    i was diagnosed with Stage 3-C in January 09.  I had the sandwich treatment with 3 chemo ( 3 weeks apart ), then 28 external radiation, followed bt a 28 hour internal radiation, then 3 more chemo treatments.   I had 18 months before I had 7 more treatments (3 weeks apart).  Then I only had 7 months before I needed 6 more chemo treatments.  My last chemo was 5/12.  I have been on Aromasin pill which slows the Cancer growth.   I had an enlarged lymph node close to my trachea which I had 10 SBRT treatments to in 9/14.   

    When I was diagnosed I was told the Cancer was not curable, but treatable.  So for 6 years I have been treating and expect more chemo in the future.   I enjoy my time between treatments and try to find joy in every day.  I have a wonderful supportive husband, just as you are supporting Lorraine.  It is so important for us, but k ow how difficult it is for you, too.

    good luck to both of you.  In peace and caring.

    thanks for sharing all of

    thanks for sharing all of this, ladies! We're so lucky to have found this place. Not sure how active we'll be up here the next few days, but i will keep everyone updated as much as possible. 9 hours away from round one. You have all been vey helpful and we're forever grateful. Talk to you's soon as possile.

  • bob13440
    bob13440 Member Posts: 66
    #109
    bob13440 said:

    thanks for sharing all of

    thanks for sharing all of this, ladies! We're so lucky to have found this place. Not sure how active we'll be up here the next few days, but i will keep everyone updated as much as possible. 9 hours away from round one. You have all been vey helpful and we're forever grateful. Talk to you's soon as possile.

    day after

    Wow...eating SO good and the new pain meds they gave her are working wonders! Between the steroids and the Percocet, today has been the best day by far since the diagnosis. We'll see what each day brings, but today has been such a great one!Laughing

  • Fayard
    Fayard Member Posts: 438 Member
    #110
    bob13440 said:

    day after

    Wow...eating SO good and the new pain meds they gave her are working wonders! Between the steroids and the Percocet, today has been the best day by far since the diagnosis. We'll see what each day brings, but today has been such a great one!Laughing

    Great news!

    Great news! Laughing

  • AWK
    AWK Member Posts: 364 Member
    #111
    bob13440 said:

    day after

    Wow...eating SO good and the new pain meds they gave her are working wonders! Between the steroids and the Percocet, today has been the best day by far since the diagnosis. We'll see what each day brings, but today has been such a great one!Laughing

    Just checking in

    Wanted to send some encouragement in case she started to experience some side effects in the last day or so.  It is normal for things to kick in a couple of days after the treatment.  And if not - lucky her!  Hoping all is well.  Stay on top of the hydration, nibbles and walks if you guys can.  Anne

  • bob13440
    bob13440 Member Posts: 66
    #112
    yes

    the day after was so encouraging! Lorraine has gotten a little weaker and more tired every day since. We're not discouraged, just a little drained. She's back for round 2, Monday. We're keeping a journal to see if there'll be a pattern we can go by. She's having some major hot flashes when she sleeps, I'm hearing that's not unusual. We're keeping her active, but trying not to over-do it. Appetite seems good, not great... BM's are much better, and her stomach is still sore, but we know it's because it's healing from surgery. If we could just get her comfortable at night to get some quality sleep, I think it would be so helpful. If anyone has any advice or comments, they'd be very appreciated. Thanks for asking about Lorraine's status!                                                                                                

  • Lisa 00
    Lisa 00 Member Posts: 134 Member
    #113
    quality sleep

    Just chiming in with my suggetion for 'quality sleep'.  Valerian root.  I've only used an extract, but I hear there are pills available.  A dropper full of the liquid in a little water and I do think it helps one to drop off to a good sleep. 

  • AWK
    AWK Member Posts: 364 Member
    #114
    bob13440 said:

    yes

    the day after was so encouraging! Lorraine has gotten a little weaker and more tired every day since. We're not discouraged, just a little drained. She's back for round 2, Monday. We're keeping a journal to see if there'll be a pattern we can go by. She's having some major hot flashes when she sleeps, I'm hearing that's not unusual. We're keeping her active, but trying not to over-do it. Appetite seems good, not great... BM's are much better, and her stomach is still sore, but we know it's because it's healing from surgery. If we could just get her comfortable at night to get some quality sleep, I think it would be so helpful. If anyone has any advice or comments, they'd be very appreciated. Thanks for asking about Lorraine's status!                                                                                                

    I had, and continue to have, those same issues post treatment.

    For sleep and to help with stomach, digestion etc I drink a mint and chamomile tea before I go to bed.  I get night sweats but the doctors say it is most likely my body flushing through the treatments although I had not experienced menopause prior to my surgery. I tried to stay in a loose routine of sleep and awake even if I was exhausted.  On the worst nights I would take either Benadryl or Nyquill which really helps with the sweats.  My doctors were okay with it.  I also have a low dose prescription for a sleeping pill that I rarely take because of the way I feel the next day.

    The journal is a great idea, I shared mine with my doctor.  It will get better after the first round since you will have an idea of what to expect.  And everything is temporary.  Hang tough.

    She is now a Chemosabe.  A great group of strong people.  Hugs - Anne

  • bob13440
    bob13440 Member Posts: 66
    #115
    thanks

    Anne and Lisa, thank you for the tips. Every bit of advice is helpful. Can't wait for a day when we take a drive on a sunny day to our camp. It's the simple things that get us excited. Have a good day everybody!

  • nempark
    nempark Member Posts: 681
    #116
    bob13440 said:

    thanks

    Anne and Lisa, thank you for the tips. Every bit of advice is helpful. Can't wait for a day when we take a drive on a sunny day to our camp. It's the simple things that get us excited. Have a good day everybody!

    Meds. talk to Doc

    ambiem  will give her a good night's sleep.  I know we don't want to take more meds., but to get a good night's sleep. Why not.

  • bob13440
    bob13440 Member Posts: 66
    #117
    nempark said:

    Meds. talk to Doc

    ambiem  will give her a good night's sleep.  I know we don't want to take more meds., but to get a good night's sleep. Why not.

    latest situation

    because her stomach is so tender she can only lay on her back, but now her butt is really sore from laying on it all of the time, to the point where it keeps her from sleeping. ugghhh

  • AWK
    AWK Member Posts: 364 Member
    #118
    bob13440 said:

    latest situation

    because her stomach is so tender she can only lay on her back, but now her butt is really sore from laying on it all of the time, to the point where it keeps her from sleeping. ugghhh

    Do you have a recliner?

    I alternated sleeping on the bed and in our recliner.  I would sit up and kept a pillow across my stomach in the recliner and sitting up. I had a lot of lower back pain.  Little walks help a lot with that too if she can do it.  Hang in there!  Anne

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    #119
    AWK said:

    Do you have a recliner?

    I alternated sleeping on the bed and in our recliner.  I would sit up and kept a pillow across my stomach in the recliner and sitting up. I had a lot of lower back pain.  Little walks help a lot with that too if she can do it.  Hang in there!  Anne

    Hi

    I also sleep in my recliner once in awhile.  Both oncologists that I have had perscribed Hydrocodone for pain  I only take it after a Neulasta shot when all my bones hurt,  It actually helped and let me sleep somewhat better.  You remind me of my husband and best friend.  He so takes care and worries about me.  I think it is harder on him sometimes.  Your wife and I are so blessed to have caring men in our lifes.  Lou Ann

  • bob13440
    bob13440 Member Posts: 66
    #120
    question

    Lorraine's stomach has 4 holes in it from surgery that need packing every day. She's really down about this, she doesn't think they're healing and somedays the packing falls out and there's a substance that comes out with it.  Anyone else have this after their surgery and how long before it was healed? Thank you

  • soul-mate
    soul-mate Member Posts: 82
    #121
    bob13440 said:

    latest situation

    because her stomach is so tender she can only lay on her back, but now her butt is really sore from laying on it all of the time, to the point where it keeps her from sleeping. ugghhh

    Medical grade Sheepskin

    Hi Bob

    I was a caregiver and dealt with similar sitting problems for my wife. The only thing that seemed to prevent sores and pain from prolonged seating was a Australian medical grade sheepskin. Read up on it and it tells you what to look for, it's not expensive when I saw the benefit it provided for her. I hope this helps and wish you all the best on this journey.

    SOUL-MATE

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