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Home from auto SCT

paella's picture
paella
Posts: 81
Joined: Jun 2012

 

Home has NEVER felt so good.  Really, NEVER.  Ever.  Ever. 

 

 

 

Overall, this has been harder, physically, than any previous therapy (including the nearly 600 hours of R-EPOCH + Neupogen back in '11 when my 2 forms of NHL were finally diagnosed.) Through all of that I nearly-always felt like a successful, robust and vigorous warrior.  I fully expected to feel the same THIS TIME.  Great expectations but reality is slightly different.

 

 

 

It can take 6 to 12 months for harvested stem cells to complete their bone marrow work and for one to feel normal again (so said every nurse, doc, PA and  article).  Frankly, I thought that was hogwash and that by now I'd be easily walking at least one dedicated hour a day, mostly feeling in the pink, eating aplenty, and showing them all!!! 

 

 

 

I’m really trying to spend as much time as I can standing or even sitting…anything but lying down....lying down feels like I'm giving in!  Cooking, laundry, watering the flowers (but no gardening), doing some stretching exercises,  even sitting over a jigsaw puzzle or watching  TV in a chair or answering  emails – anything to avoid being in bed.  But somewhere between 11:AM and 1:00 PM I crash.  Then I simply have to be in bed for 3 to 5 hours.  After that, for the balance of the day I’m still weary, fatigued and beat.  Maybe if I could fall asleep during those lie-downs it would help but sleep completely evades me at those times.

 

 

 

My wonderful husband is definitely pampering me and making me take breaks if I’m overdoing it.  But I really didn’t expect the fatigue to be so severe.  Some shortness of breath and dizziness, too, if I get up to fast.

 

 

 

On a positive note, my appetite is improving and food usually tastes fairly normal now.  I am trying to eat 5 small meals a day and am drinking at least 2 liters of liquids. 

 

 

 

Additionally, I had an excellent 1st follow up with medico last week (after one week home) – blood work and commentary all fine.  A Petscan is scheduled for 60 days post-transplant day (Zero Day)…is that normal so soon?  Doc mentioned she was considering Maintenance Therapy (rituximab) for possibly 2 or 3 years.  Is that typical?  

 

 

 

Best to all - Paella

 

Sal0101's picture
Sal0101
Posts: 136
Joined: Sep 2015

Wonderful news that you're home!  I'm following your progress closely as my SCT (if all goes well of course)  will be by October.  I'm rooting for you!!

Sharon

Rocquie's picture
Rocquie
Posts: 857
Joined: Mar 2013

I am really happy to hear from you. I have been thinking of you a lot. I woke up this morning wondering about you. So thank you for the update.

Even if the procedure was more difficult that you thought it would be and recovery is taking longer than you expected, it sounds like you are doing very well. Getting up to do things around the house and resting when needed sounds perfect to me. I'm so glad your husband is being supportive--that is so important.

Take care and try not to be too hard on yourself--you are doing the best you can.

Hugs,

Rocquie

 

Max Former Hodg...
Posts: 3699
Joined: May 2012

That's wonderful, Paella, and your testemony is an inspiration to the many others who are moving toward their own SCTs.

May your labs continue to be great, and may your energy return in time,

max

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

I've been wondering how you were doing and I'm so glad that you're putting this behind you and moving forward in great Paella form!  A true inspiration indeed.

May you continue to improve each and every second!

Blessings 

Kaniksu
Posts: 54
Joined: Nov 2015

i think he fatigue is the worst.: hang in there girl.. you are a warrior! We are all pulling for you..

lindary's picture
lindary
Posts: 711
Joined: Mar 2015

The 2 years of Rituxan sounds normal. The Drs feel that it gives a better chance of staying in remission. 

Glad your SCT is over and you are now building your new immune system. Everything I have read about SCT has said the recovery takes a long time. That afternoon nap, don't fight it. Your body needs to rest and as long as you still sleep good at night, take the nap. Just do what you can when you can and let your body & bone marrow heal. 

po18guy's picture
po18guy
Posts: 1222
Joined: Nov 2011

Grerat news! They harp on you to take all sorts of seemingly extreme precautions. I wore a mask in public right up to the one year mark. Was it a hassle? Yes. Was constantly sanitizing things and hand washing also a hassle? Yes. Was the absolute lack of infection during that year a problem? Not one bit. Since infection is the #2 enemy of transplant patients, I am huge on infection control issues. But, each of us behaves completely differently post-transplant. Some spring right back into things, while others must seemingly wait for sufficient levels of energy to arrive. I was one who had to wait.

paella's picture
paella
Posts: 81
Joined: Jun 2012

 

 

Really good to hear from all of you – great positive reinforcement~ thanks for taking the time! 

 

So, here’s a question:  Is shortness of breath pretty normal after an auto SCT?  It seems like I’m always somewhat short of breath after even minor activity.  (My zero day was about 30 days ago.)  Much, I know is dependent upon the types of heavy-duty chemo and the condition and age of the patient; my chemicals were: Etopiside, Carmustime, Cyclophosphamide, Melphalan, amd Cytarabine and I went into this a fit 67 year-old.    

 

The  doc is having me get an echocardiogram in 2 weeks because she wants to rule out any possible heart damage.  My bloodwork is good and she says my lungs sound fine and that the Echo is “just precautionary”.  Everything I read is that shortness of breath is very common post sct.   

 

Do you agree?

 

Thanks - Paella

 

 

 

 

 

Max Former Hodg...
Posts: 3699
Joined: May 2012

I have written several long pieces on the issue of breathing problems, but I can't recall the titles.

While I have not had a SCT, I know too well that numberous chemos damage or impare the lungs. BLEOMYCIN (a med in ABVD) is the worst of the worst.  Adriamycin (sometimes calle Rubex, or several other names; a drug in CHOP and EPOCH) can affect breathing through heart damage.

It would be wise to ask for a heart ultrasound, specifically to look for EJECTION FRACTION. This is a quick, painless outpatient test.  Ejection fraction is a value you want to know.

Also ask for a Respritory Function test, also a quick outpatient proceedure.   

I learned that I have fibrosis and asthma, but the asthma is now well controlled with inhaler, and I breath better now than I have in years.

I would ask for the ultrasound. An EKG is good to have, but represents minimal investigation of your issue by the doctor,

max

paella's picture
paella
Posts: 81
Joined: Jun 2012

 

In 2 days, my shortness of breath has almost disappeared and I’m feeling surprisingly good.   Nevertheless I will definitely talk to the doc about an ultrasound (Ejection Fraction) as well as Respiratory function as you recommended.  I had a respiratory function test prior to all this so they’ll have a good baseline to compare it to.  Glad to hear you’re breathing better than you have in years.

 

Paella

 

 

 

Max Former Hodg...
Posts: 3699
Joined: May 2012

I'm delighted you are breathing better, Paella

Be aware that cardiac imparement from chemo drugs is often delayed in causing symptoms; Adriamycin effects can be delayed 8-10 years.

I am not meaning to be a killjoy, just thorough in transferring an awareness of these issues,

max

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