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Thread: CHOP Experience, to an auto SCT for AITL / PTCL

  1. #71
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    Day +3, WBC down to .13, HGB 10.5, Platelets 52. Fever set in last night and has continued off and on through the day depending on Tylenol treatment. It is good that the appetite has disappeared because I am subsisting on small sips of Ginger Ale! While my mouth care has kept the mouth in good order, the mucositis in the throat has to be kept at bay with pain meds. Trying to minimize swallowing.

  2. #72
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    Day +4. There was an early morning rumor that my White counts had actually gone up! I was too groggy to get the counts. It am happy to visualize the stem cell puppies grafting and starting to yap! Each one with the insuppressible energy of a boy westie named Benji! I expect that there might also be some normal fluctuations in the system. We shall see.

    Currently I am on Morphine every four hours. There was a choice to get this as a drip, but having an injection "wave" seems to work well for me. I fall asleep soon after the boost. All meds which can be taken by IV are being given that way. As I explained to the nurse, it is not the size of the pill, it is just swallowing that is a challenge. OK, I was being too much work and bother! A morphine drip it is!

    So, I have been hard at work mastering the fine art of drooling! This sticky mucus needs to be cleared from the throat, ideally without swallowing. I was offered vacuum suction, but the wonderful paper / wax buckets have done the trick nicely.

    Ginger Ale has become much to caustic. I had hoped that I could let the sugars absorb through my tongue.

    WBC up to .15, HGB 9.3, Platelets 25. Transfusions expected when HGB is 7.0 and Platelets get to 10.
    Last edited by jwessel; 10-06-2019 at 02:47 PM.

  3. #73
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    Day + 5. Starting to understand the ropes, in this cycle of counts going down, fevers, morphine, and Tylenol. Was coaxed into trying a liquid dose of Tylenol. Do not do it! The flavoring agents make it quite caustic, like liquid Benadryl. The quantity to replace two small tablets is close to an ounce - definitely two swallows. For me it was much worse than dealing with two tablets.

    Right now I am on a low drip rate of morphine. Supposedly it is a Level 1 and I could go to a 3. In the middle of the night it gave me the false courage to agree to take the Tylenol for fever without any additional pain meds! Don't do it! This morning I had a minor fever and I requested a nurse's dose of morphine. This has worked the best. I may bump the drip rate to a 2 on principle. Swallowing the Tylenol tablets was not the major issue 20 minutes after the nurse was able to administer their .20mg bump! Drip rate has been bumped to a level 2

    Counts have come in: WBC .010, HGB 9.2, and Platelets of 8. We need to find a window where there is no fever to do the transfusion. Most recent vitals noted a fever. We missed the morning bus for transfusion. Seemed like it was intentional.

    Temperature will be monitored more closely so that transfusion can be started as soon as possible. It is increasingly difficult to complete sentences or long words without errors!

    But life is good! Some of it is laughingly frustrating. A high level of attention to cleanliness including daily mopping the floor, etc. But I have been using the same, increasingly grungy urine carafe! Including the one with the broken and now missing lid!

    Platelet transfusion successfully pulled off this afternoon!
    Last edited by jwessel; 10-07-2019 at 09:37 PM.

  4. #74
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    I just wanted to let you know that I am reading your daily posts and praying for you - also the mother next door. You are detailing your journey very well! I find it amazing that you have the strength to do so. I would love to hear more about your mental and emotional state that you had described one day and said more was to come! Only when you are ready.

  5. #75
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    Deb, thanks for you prayers and for remembering the lady next door.

    Counts went down further, however I feel like I am turning the corner for good! I was able to drink first 1tbs and then 2 more tbs body temperature Manuka Honey Water without a Morphine primer! So next goal is 1/4 cup!

    WBC .08, HGB 9.2, Platelets 10. Typically they would be scheduling another Platelet transfusion at 10, but evidently there is a shortage. I am happy with no additional transfusion.

    Fever situation has been better. Only a technical fever of 100.4 this morning and lowering temperature readings throughout the day and then normal 98.7 in the afternoon.

    We will see what tonight and tomorrow bring!

    Wife finally gave in to a no guard, buzz cut of the three month hair grow back following CHOP. I was starting to mange. And then it was off to the bath! I would pay good money, to watch whoever designed the showers in the bathroom, take a shower while connected to 3 IV leads and balancing 4 pumps demanding attention or plug in! But we managed, and following repentance for an occasional wayward word, My wife and I both felt better, napped soundly, and are optimistic that perhaps todays dressing change might be the last one!
    Last edited by jwessel; 10-08-2019 at 09:25 PM.

  6. #76
    Super Moderator Top User po18guy's Avatar
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    It is so good that you are making progress - and it is incremental rather than monumental. Having DW by your side is priceless, but this must be very hard for her to watch. I/f your counts take a tumble, I/ am sure hat you have been advised not to worry. They will rise and fall, for no apparent reason, for months or even years following.

    Honestly, the time I spent 'in-custody' was the worst two weeks of the entire seven year journey. I just stared out the window at the hot July days - watched the Blue Angels in flight! - and longed wistfully to be one of those lucky folks walking beside the ship canal adjacent to the hospital. When my counts had been high enough to be released, I never looked back. I found the hospital environment to be depressing, the protocols almost punitive.

  7. #77
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    Autumn in the Northeast/west. My favorite time of year. I am getting a nice view of crystal clear fall weather outside. Fortunately I have been able to stay inside, in the moment. Day 1-5 demanded their own focus without adding to it wishes of being elsewhere. The picture of the granddaughter eating a nice crisp apple freshly picked and enjoying cider was tough! Days 6+ and taking great joy in each step back have made the days better.

    Improvement continues and I have not had a fever since yesterday morning. WBC is up to .13, HGB was 7.3, Platelets had fallen to 5. Transfusion of a bag of platelets first thing this morning. I had started getting bloody mucus and nose bleeding. A transfusion yesterday, when needed, would have headed this off.

    Now making my way to sipping through a cup of honey water. Next is some body temperature broth!

    Lowered base pain meds and skipped the nursing boost. Hope to be off pain meds tomorrow!

    One never wishes cancer on a spouse just to be able to share experiences, but helping each other through this is it's own unique blessing!

  8. #78
    Super Moderator Top User po18guy's Avatar
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    Quote Originally Posted by jwessel View Post
    Autumn in the Northeast/west. My favorite time of year. I am getting a nice view of crystal clear fall weather outside. Fortunately I have been able to stay inside, in the moment. Day 1-5 demanded their own focus without adding to it wishes of being elsewhere. The picture of the granddaughter eating a nice crisp apple freshly picked and enjoying cider was tough! Days 6+ and taking great joy in each step back have made the days better.

    Improvement continues and I have not had a fever since yesterday morning. WBC is up to .13, HGB was 7.3, Platelets had fallen to 5. Transfusion of a bag of platelets first thing this morning. I had started getting bloody mucus and nose bleeding. A transfusion yesterday, when needed, would have headed this off.

    Now making my way to sipping through a cup of honey water. Next is some body temperature broth!

    Lowered base pain meds and skipped the nursing boost. Hope to be off pain meds tomorrow!

    One never wishes cancer on a spouse just to be able to share experiences, but helping each other through this is it's own unique blessing!
    Great! You know, I never paid attention to the numbers, even though I am a numbers guy. In my mind, it was a go/no-go situation. I either had to stay, or I could be released. Maybe a touch of light switch mentality, but that's how I viewed it.

  9. #79
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    Day +8. Day started out rough primarily due to poor sleep between 1am and 3am, during which I produced a lot of mucus which was increasingly bloody. I was positive that I would be needed another platelet transfusion and temperatures were hovering near a fever level and I seemed to be going "backward". Another annoyance was the night nurse had undone the shutdown of an unneeded pump so that I was once again plugging in and unplugging 4 vs 3 pumps, evidently to keep the battery juiced for the "House". Every little ground gained / lost is out of proportion. Everything I had to drink the day before seemed to be coming out the wrong system as watery runs. I was grumpy.

    Pleasant surprise! Final vitals for the night showed no fever, and counts for the day were WBC almost doubling to 0.22, HGB at 7.1, and platelets of 11. No morning transfusion! HGB requires a transfusion or RBCs at 7.0.

    The numbers for a ticket home are; 48hrs of no fever, WBC of 1.0, ability to drink close to a liter. I hope to make it home Monday or Tuesday, Day +12 or +13!

  10. #80
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    Hi jwessel thank you for sharing your story.

    Hope your improveming in ongoing and fingers crossed that next week you can relax at your place, and before checking out dont forget to handle a proper kick on the door of that arch enymy ( aka the toilet )!!!.

    Take care.
    Nov/17 : Wife 36y diagnosed DLBC NHL in the Breast ( Stage 1AE )
    Nov/17 : Started 6 x RCHOP 21 ( finished Mar 2018 )
    Apr/18 : PET/CT early April confirmed in Complete Metabolic Response
    On to 15x Radiation ( total of 30Gys )
    May/18: Rads done
    Ago/18: 3x HDMTx completed!
    Dev/18: PET-CT Done. All good
    Apr/19: Follow up. All good.
    Oct/19: Follow up. All good.
    ... on to follopw ups...

 

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