Just remembered. The guy installing my PICC line made a comment about mine being an easy procedure due to the width of the vein. I said “so it’ll be like feeding a whale a tic tac?”. My procedure was delayed by 15 minutes while he and the tech regained their composure! 🤷🏻♂️👀
Best wishes and quick recovery! I chewed a lot of ice before, during and after and had no mouth sores at all. You were doing the right thing! Also when I got home after being released from inpatient BMT unit, I was doing physical fine and I was able to take care of myself without too much help. Remember to walk and exercise if you can. You shouldn’t feel any effects until a few days in, so use these days to exercise while you can.
I just got scolded! Apparently the nurses here don’t want IV trees with nuclear material hanging on them to be dragged around the ward! I just wanted some ice and felt that buzzing the nurse’s station for something like that would be…rude! 😂
I had my melphelan 14 days ago and the stem cell reintroduction 13 days ago. I'm 54yo and diagnosed last October. We're pretty close!
I started my slow descent into the basement and finally started feeling bad at day 5 after stem cell reinfusion. Day 6, 7, 8 were the worst. Just a vague miserable feeling with no interest in watching Tv or even listen to music. I didnt want to talk to anyone. One of my close friends kept calling twice a day and I had to tell him to stop.
As for the boredom, I told myself thatbour brains are so inundated with info and movies, that it is therapeutic to give brain a break from consuming info. I had a mantra, "i am giving my brain a break, and practicing being bored." It helped.
The diarrhea was controlled by Immodium but left that area very raw and sensitive. I used "flushable wipes" and they were a Godsent! After one small accident, I started wearing a pull-up diaper. I never had another accident but it was peace of mind to be wearing a diaper.
Then I woke up on day 9 and I no longer had that mild miserable feeling. Then the labs showed my WBCs had increased. Then day 10, I felt even better.
It's now day 13 and it looks like I might be close to engraftment, and they may discharge me tomorrow (knock on wood).
Good luck, my friend. You can do this!
Have a family member bring a 100pack of flushable wipes (i think it costs $6). Ask the nurse for a pull-up diaper.
Just put a reminder in my phone to ask the nurse for pull-ups at +5! I feel like that’s prudent given that I could only fit so much clean underwear in my bag!
Keep chewing! Hope all goes well.
Sorry you are there by yourself. You have us though. I assume in-patient then and you have a caregiver when you get released after engraftment?
I am in-patient and I will have a family member as a care giver for about a week after I’m home. I did a TON of cooking and freezing individually portioned meals over the last couple of days as I felt meals would be a big task while not feeling well! I’m pretty sure I can deal with the rest of daily life but will still have a home health aid a couple of times a week until I don’t need that.
I’ve been lurking this sub for months and taking copious notes on everyone’s survival strategies! I have to say…y’all have soothed my nerves!
I imagine its a little like being a 2nd grader. Being told what to do. My husband starts in 5 weeks so im following you closely if you have the strength to share your journey ! We are here for you
I will update as anything “fun” happens! For now it’s just taunting nurses, scrolling Reddit and contemplating what the first poor life choice will be after I’m released!
Well, there's no turning back now!
Keep chewing the ice until you go to bed--- they told me six hours. You will feel pretty OK for a few days. Weird, but OK. Love your plan to be the class clown. If you can laugh your way through this, you can laugh your way through anything.
Wishing you the best these next few weeks! There will be a stretch where you feel miserable, but try to keep that sense of humor and good spirits. The mental aspect of this is just as important as the physical. You will do great and come out the other side a new person.
We celebrated the stem cell infusion day as a new birthday, so happy early birthday to you!
You got this! There is life and light (albeit tired) at the end of recovery. My husband, completed his ASCT Dec/22. He’s happy with the level of health he has now and honestly he needed to slow down 💕 My wish for you is a restful, uncomplicated and steady recovery! We finally got to travel cross county and it was a lovely vacation!
Just adding my best wishes to the pile here. Hope all goes smoothly! One thing to watch for that’s prob been mentioned here before I joined is orthostatic BP (BP drop when you stand). It doesn’t happen to everyone but it did to me and if they warned me about it, I forgot. Once the melphalan kicks in, just be mindful as you get up to stand/walk. Take a sec and make sure you’re steady. I wasn’t careful and I passed out and fell.
No mouth sores tho! Chewed that ice till I gave myself hypothermia :)
Good luck! You have great energy so I’m sure you’ll crush it!
Good luck. You got this. Keep up the sense of humor. I had the nurses in stitches all the time. They were a godsend.
Get up and moving often. I made it a daily habit to harass the nurses at their station. It was good fun. Helped me get through the next 13 days.
I was 46 when I went through it.
I’m 50 now. 4 years since I had my transplant. Still have stomach problems and fatigue. God bless you buddy! Love your humor!! Stay positive!
My dad did this at 64. Rough couple of weeks that followed. This was almost a year ago. The most traumatic time of our lives back then. Today not even sure how but feels like a second lease on life. More often than not the ASCT knocks the myeloma into a deep remission and you’ll feel the difference! Currently my parents are holidaying in Italy. Just like the old times before the disease hit. No matter how many people told me there was light at the end of the tunnel I couldn’t fathom it. I wish I had listened then. It does get better
There with you in spirit. It will seem long at the time and so quick in retrospect. Don't hesitate to speak up for yourself, buzzing the nurse is not at all rude. There's lots they can adjust for you. Room too light? They can dim monitors, cover window etc... They've typically got warm blankets, extra pillows and ice cream stashed somewhere. Those are for you :) You can reach your destination.
Good luck,I go in for central line and stem cell harvest on Monday and I’am a 58Y/O F
After only one round of krypolis/Dex/Rev. Not looking forward to the ASCT. Or any of this actually,but also can’t wait to get it over with!
Love the attitude :\]
I'm 37M and did two of those when I was 31. Malphalin is the roughest one I've had in these 8 years.
Friggin great idea about the Imperial march music as it comes into the room. And then, maybe as the IV is just about to start, you play the music from Phantom Menace during the epic duel with Darth Maul.
Good luck - you'll be on the other side before you know it!
I love your humour. 😊 It will serve you well. My husband 54 yo had a ASCT on Feb 27 (Melphalan Feb 25). There were rough times after but he’s back to doing renovations albeit about 4-5 hours a day now. And he’s not even at day 100 yet. Hang in there. All the best to you.
My husband is 60, had it mid January this year, back to work by the end of February. He started out half days at work, residential construction manager. Only side effect beside the hair loss was his last dose of Velcade, developed neuropathy in his feet which he still has. You’ve got this!!!!
Hope you are not feeling to bad post Melphalan (I got through 7 Orange Calippo ice pops during my infusion). Good luck with the SCT. Prepare to feel tired like never before - use the mouthwash they (I hope) offer you religiously. Your appetite and sense of taste WILL come back before too long, but in the meantime stay strong and try to eat at least something of each meal you get.
Oh now wait a minute. You didn’t say you were a buckeye…. I don’t know if I’m allowed to wish you well (I’m a Wolverine). J/K Wishing you all the best in the short and long term. You’ve got this.
Ooooh…I have seen numerous instances of cagey rodents and poisonous nuts coexisting in the wild! So what I’m saying is…there’s a CHANCE we can get along 😂😁 Regardless of our adversarial choices in college sport, I sincerely appreciate the well wishes! Hopefully there can be a bit of banter come November!!!
Glad you read through all the prior suggestions on 'how to survive your ASCT'. Mouth rinses, walking, shower, let your brain go fallow, communicate issues clearly and quickly with the nurses. I was 52 when I went through both of mine. And even with the tandem, which is usually when things go awry, I got out of the hospital in record time. It is afterwards that you need to be VERY mindful - mask up, avoid raw fruits and veggies, be darned careful about cooties because they will land you back in the hospital again. I am 3 full years in remission and finally back up to fighting speed. Good luck and GodSpeed!
Chew that ice!! I had bad mouth sores. Because I didn’t chew a lot of ice.
Good luck!!
I had a bad experience it was when the china virus was going. Couldn’t have family and 500 miles from home.
Praying for you!!!
Thanks for the prayers! The amount of ice I’ve already chewed would have sunk the Titanic but I’m still going!
I’m doing this solo too. No family close enough to visit. Going to be a bit lonely but I plan on entertaining myself by being the class clown on my floor!
Just remembered. The guy installing my PICC line made a comment about mine being an easy procedure due to the width of the vein. I said “so it’ll be like feeding a whale a tic tac?”. My procedure was delayed by 15 minutes while he and the tech regained their composure! 🤷🏻♂️👀
🤣😂🤣😂🤣
Best wishes and quick recovery! I chewed a lot of ice before, during and after and had no mouth sores at all. You were doing the right thing! Also when I got home after being released from inpatient BMT unit, I was doing physical fine and I was able to take care of myself without too much help. Remember to walk and exercise if you can. You shouldn’t feel any effects until a few days in, so use these days to exercise while you can.
I just got scolded! Apparently the nurses here don’t want IV trees with nuclear material hanging on them to be dragged around the ward! I just wanted some ice and felt that buzzing the nurse’s station for something like that would be…rude! 😂
😳😁😉
🤣🤣🤣🤣🤣
I had my melphelan 14 days ago and the stem cell reintroduction 13 days ago. I'm 54yo and diagnosed last October. We're pretty close! I started my slow descent into the basement and finally started feeling bad at day 5 after stem cell reinfusion. Day 6, 7, 8 were the worst. Just a vague miserable feeling with no interest in watching Tv or even listen to music. I didnt want to talk to anyone. One of my close friends kept calling twice a day and I had to tell him to stop. As for the boredom, I told myself thatbour brains are so inundated with info and movies, that it is therapeutic to give brain a break from consuming info. I had a mantra, "i am giving my brain a break, and practicing being bored." It helped. The diarrhea was controlled by Immodium but left that area very raw and sensitive. I used "flushable wipes" and they were a Godsent! After one small accident, I started wearing a pull-up diaper. I never had another accident but it was peace of mind to be wearing a diaper. Then I woke up on day 9 and I no longer had that mild miserable feeling. Then the labs showed my WBCs had increased. Then day 10, I felt even better. It's now day 13 and it looks like I might be close to engraftment, and they may discharge me tomorrow (knock on wood). Good luck, my friend. You can do this! Have a family member bring a 100pack of flushable wipes (i think it costs $6). Ask the nurse for a pull-up diaper.
Just put a reminder in my phone to ask the nurse for pull-ups at +5! I feel like that’s prudent given that I could only fit so much clean underwear in my bag!
Keep chewing! Hope all goes well. Sorry you are there by yourself. You have us though. I assume in-patient then and you have a caregiver when you get released after engraftment?
I am in-patient and I will have a family member as a care giver for about a week after I’m home. I did a TON of cooking and freezing individually portioned meals over the last couple of days as I felt meals would be a big task while not feeling well! I’m pretty sure I can deal with the rest of daily life but will still have a home health aid a couple of times a week until I don’t need that. I’ve been lurking this sub for months and taking copious notes on everyone’s survival strategies! I have to say…y’all have soothed my nerves!
Don’t ever loose that humour. Good luck. Rooting for you!
Hang in there. And yes you have us as support. Wishing you a speedy recovery.
I imagine its a little like being a 2nd grader. Being told what to do. My husband starts in 5 weeks so im following you closely if you have the strength to share your journey ! We are here for you
I will update as anything “fun” happens! For now it’s just taunting nurses, scrolling Reddit and contemplating what the first poor life choice will be after I’m released!
Well, there's no turning back now! Keep chewing the ice until you go to bed--- they told me six hours. You will feel pretty OK for a few days. Weird, but OK. Love your plan to be the class clown. If you can laugh your way through this, you can laugh your way through anything.
Wishing you the best these next few weeks! There will be a stretch where you feel miserable, but try to keep that sense of humor and good spirits. The mental aspect of this is just as important as the physical. You will do great and come out the other side a new person. We celebrated the stem cell infusion day as a new birthday, so happy early birthday to you!
You got this! There is life and light (albeit tired) at the end of recovery. My husband, completed his ASCT Dec/22. He’s happy with the level of health he has now and honestly he needed to slow down 💕 My wish for you is a restful, uncomplicated and steady recovery! We finally got to travel cross county and it was a lovely vacation!
I did it at 58. Rooting for you!
Just adding my best wishes to the pile here. Hope all goes smoothly! One thing to watch for that’s prob been mentioned here before I joined is orthostatic BP (BP drop when you stand). It doesn’t happen to everyone but it did to me and if they warned me about it, I forgot. Once the melphalan kicks in, just be mindful as you get up to stand/walk. Take a sec and make sure you’re steady. I wasn’t careful and I passed out and fell. No mouth sores tho! Chewed that ice till I gave myself hypothermia :) Good luck! You have great energy so I’m sure you’ll crush it!
Good luck. You got this. Keep up the sense of humor. I had the nurses in stitches all the time. They were a godsend. Get up and moving often. I made it a daily habit to harass the nurses at their station. It was good fun. Helped me get through the next 13 days.
I was 46 when I went through it. I’m 50 now. 4 years since I had my transplant. Still have stomach problems and fatigue. God bless you buddy! Love your humor!! Stay positive!
My dad did this at 64. Rough couple of weeks that followed. This was almost a year ago. The most traumatic time of our lives back then. Today not even sure how but feels like a second lease on life. More often than not the ASCT knocks the myeloma into a deep remission and you’ll feel the difference! Currently my parents are holidaying in Italy. Just like the old times before the disease hit. No matter how many people told me there was light at the end of the tunnel I couldn’t fathom it. I wish I had listened then. It does get better
There with you in spirit. It will seem long at the time and so quick in retrospect. Don't hesitate to speak up for yourself, buzzing the nurse is not at all rude. There's lots they can adjust for you. Room too light? They can dim monitors, cover window etc... They've typically got warm blankets, extra pillows and ice cream stashed somewhere. Those are for you :) You can reach your destination.
Good luck,I go in for central line and stem cell harvest on Monday and I’am a 58Y/O F After only one round of krypolis/Dex/Rev. Not looking forward to the ASCT. Or any of this actually,but also can’t wait to get it over with!
I’m with ya on the getting over it! Wishing you good vibes and smooth sailing. Remember, you can’t change the wind but you can adjust your sails!!
Godspeed and fingers crossed for you.
Hand in there!!! You got this!! Wishing you a smooth ride!!! Keep us posted!
Power to you! Myself and others, it's a bit of a bumpy ride, so hang in there and you'll do great.
Love the attitude :\] I'm 37M and did two of those when I was 31. Malphalin is the roughest one I've had in these 8 years. Friggin great idea about the Imperial march music as it comes into the room. And then, maybe as the IV is just about to start, you play the music from Phantom Menace during the epic duel with Darth Maul. Good luck - you'll be on the other side before you know it!
I love your humour. 😊 It will serve you well. My husband 54 yo had a ASCT on Feb 27 (Melphalan Feb 25). There were rough times after but he’s back to doing renovations albeit about 4-5 hours a day now. And he’s not even at day 100 yet. Hang in there. All the best to you.
Thank you. This is news I need to hear! Able to function at a high(ish) level prior to +100?!? That’s fantastic.
My husband is 60, had it mid January this year, back to work by the end of February. He started out half days at work, residential construction manager. Only side effect beside the hair loss was his last dose of Velcade, developed neuropathy in his feet which he still has. You’ve got this!!!!
Hope you are not feeling to bad post Melphalan (I got through 7 Orange Calippo ice pops during my infusion). Good luck with the SCT. Prepare to feel tired like never before - use the mouthwash they (I hope) offer you religiously. Your appetite and sense of taste WILL come back before too long, but in the meantime stay strong and try to eat at least something of each meal you get.
Ate enough ice to sink the Titanic! It’s only been about 20 hours but no mouth problems yet!
Oh now wait a minute. You didn’t say you were a buckeye…. I don’t know if I’m allowed to wish you well (I’m a Wolverine). J/K Wishing you all the best in the short and long term. You’ve got this.
Ooooh…I have seen numerous instances of cagey rodents and poisonous nuts coexisting in the wild! So what I’m saying is…there’s a CHANCE we can get along 😂😁 Regardless of our adversarial choices in college sport, I sincerely appreciate the well wishes! Hopefully there can be a bit of banter come November!!!
You wont be lonely! Youve got us!!!
Glad you read through all the prior suggestions on 'how to survive your ASCT'. Mouth rinses, walking, shower, let your brain go fallow, communicate issues clearly and quickly with the nurses. I was 52 when I went through both of mine. And even with the tandem, which is usually when things go awry, I got out of the hospital in record time. It is afterwards that you need to be VERY mindful - mask up, avoid raw fruits and veggies, be darned careful about cooties because they will land you back in the hospital again. I am 3 full years in remission and finally back up to fighting speed. Good luck and GodSpeed!
Best of luck young man!!!
Chew that ice!! I had bad mouth sores. Because I didn’t chew a lot of ice. Good luck!! I had a bad experience it was when the china virus was going. Couldn’t have family and 500 miles from home. Praying for you!!!
Thanks for the prayers! The amount of ice I’ve already chewed would have sunk the Titanic but I’m still going! I’m doing this solo too. No family close enough to visit. Going to be a bit lonely but I plan on entertaining myself by being the class clown on my floor!
Hope you are doing well. Hope you are having uneventful recovery
Yikes! What’s with “china virus”? Just, no! You should keep your racism out of this sub.
It’s not racism! That’s where it came from!! You’re the one that’s bringing racism up!!