My turn for ATG

[Snuuze]

Hi, All

I check into the hospital May 2 for ATG. I've read the horror stories as well as the not-so-horrible versions. I hate the idea of being cooped up inside, but if that's the worst that happens, I'll be a happy camper. Any suggestions for making the time enjoyable? Will I be too wiped out to read, knit or visit with friends? I do better when I know what to expect.

[Neil Cuadra]

Sue,

Good luck with your ATG treatment.

Putting specific expectations on yourself isn't necessary. Since you don't know in advance how you'll be feeling on any given day, I suggest that you bring your reading, bring your knitting, and tell friends that you'll let them know when it's a good time to visit.

You'll find some other suggestions in the How do you spend your time when you're stuck at home or in the hospital? thread.

[Ryan Jay]

For me, the best time for anything was between six and ten at night. By then, the steroids wore off and I had some energy.

I was out cold when they started the infusion at about 10AM.

[Neel]

My question is what is ATG, how it is administered, the process and what are is effects and side effects, Can ATG be given for MDS ? is it not for AA ?

Regards,

Neel

[Greg H]

Hey Neel!

Here's a post I wrote about one theory of using immunosuppression (ATG is an immunosuppressant) for MDS. It definitely works for some patients; the researchers are still trying to figure out how to tell, in advance, which folks it is most likely to help.

It is less commonly used in MDS than AA, I think. I wonder if Sue is maybe having it because she also has PNH?

When it is used to treat MDS, the data pretty conclusively shows that it's more effective when combined with a follow-up regimen of cyclosporin (another immunosuppressant). Neither is as effective alone.

Other folks are better equipped to answer your questions on how its administered, etc., because I haven't actually had it.

Take Care!

Greg

[Snuuze]

My doctor says I've got hypocellular MDS, or perhaps it's Aplastic Anemia, as the symptoms are so similar. Bone marrow is "bone dry", not much productivity going on, and all blood counts are low. It's thought that the ATG may be more effective for PNH patients who are also being treated with Soliris. It's a complicated world out there and I'm slowly learning to navigate my way through it. I so appreciate what you, Greg, and others have learned and share on this forum.

[Neel]

Thanx greg for ur inputs,

Regrds,

Neel

[Karenish]

Originally Posted by Snuuze

Hi, All

I check into the hospital May 2 for ATG. I've read the horror stories as well as the not-so-horrible versions. I hate the idea of being cooped up inside, but if that's the worst that happens, I'll be a happy camper. Any suggestions for making the time enjoyable? Will I be too wiped out to read, knit or visit with friends? I do better when I know what to expect.

it seriously was not bad - one night of fever, but that was easily dealt with by paracetamol. Rigours made me laugh because my teeth were chattering and any rashes were brought to heal by piriton. I had 3 bouts of rashes throughout the whole time, and they were not very itchy. Heart thumped a bit during the infusion over the 5 days but stopped as soon as infusion stopped. Liver took a hammering but this is back to normal now. Boredom was the worst...so I did knitting, colouring in, watched films, TV, listened to Ipod, exercised on bed, read some good books, read the daily newspaper, took charge of my own fluid chart and helped the carers to make my bed every day....its important to remain as independent as possible and fight the "sick" role I found, it was good for the soul. good luck xxx

[Snuuze]

Thanks. It looks like most of the symptoms can be managed by a watchful nurse. That's encouraging. I've got the books and knitting lined up ready to go. Five days is a long time to sit - or lie- still!

[edithr]

Hey Snuuze,

Just wanted to see how it was going today. Hope you're doing well! My son got hives the first day, and was sick (nausea, throwing up) on day two, but on day three he woke up and felt good. Just remember if you do get sick, it'll probably only last a couple hours. Drink plenty of fluids, I think it helps. Good Luck!
Edith

[Snuuze]

ATG is done - yay! Now we are dealing with the aftermath. Really rotten headaches, high blood pressure, low oxygen, one bout of throwing up, fevers. There is probably more but that's all that I remember. My treatments started late in the afternoon because of testing, receiving transfusions, etc. So I felt the side effects into the early morning. Oh, yeah, I forgot the Lasix for water retention. Now that is fun in the wee hours of the morning! Boredom hasn't been much of a problem because most of the time I felt too rotten to be bored. But it's behind me now, I have a room to myself, the sun is shining and my 4 day vacation at the hospital may end on day 8! Glad I wasn't expecting this to e a cakewalk.

[StuM]

Hi all, This is Stu, from Houston, TX. I have lived with low risk MDS and/or AA for around 20 years. The experts can't really say what it is, for sure. Very low blood counts across the board, but no symptoms or issues whatsoever all that time. We've monitored and measured for years, but no intervention. I've been seen continuously at MD Anderson in Houston, plus Stanford Medical in CA and various other lesser locations around the U.S. The experts have been amazed. While always slowly trending a bit downwards; for example, recent key factors included WBC 1.6, RBC 2.38, Platelets 12 (and as low as 9), Neut's 0.48, Hemg 9.0. Everything else is always out of whack too. The platelets are what they have always been most cautious of. Yet, no bleeding, bruising, illness, infection, fatigue, etc. Never!

Yet, when the platelets began to stay in the 10-15 range week after week more recently, I was advised that it's time to take some action. I am an otherwise healthy age 58 male. After a lot of research and 2-3 other medical opinions, we opted for horse ATG/cyclosporine and all the accompanying therapy, drugs and necessary transfusions. This forum helped me a great deal with trying to understand what to expect and get over at least some of the fears and uncertainties. To all of you now, thanks very much.

I entered MD Anderson on 7/28/11 and began this phase I of the journey. I must say, MDA is an wonder, exceptional place and their entire staff is even better. I could not have asked for a more professional, communicative, supportive and responsive team, from top to bottom. Prep and check-in was quick and well planned. The facility is as good as any first class hotel I have used, around the world, as is their food service, medical and support staff.

As for the actual treatment, it went per plan, for the most part. A few experiences to share, to hopefully help others...
As many of you understand, a great may needle sticks for everything under the sun. Pre-blood testing, skin tests with the ATG to determine any potential allergic reactions before the full initial application. My skin test itched a bit, but no rash or anything else, so we were a go. My initial ATG application started out slowly and they ramped it up in stages. All went well and I tolerated well, until they got to the higher rate of application. I forget that rate, but things began to go a bit tilt at that point. The chills came on and built up quickly, followed promptly by the onset of rigor or shakes. They became increasingly violent and at some point I lost track of things. My wife was holding me and had to call the nurses in to cut the application and apply steroids. What I recall, it was not a fun trip. The cessation began to calm things down again and eventually I became re-aware of things and settled down. Nausea and diarrhea then set in and passed within a half hour, or so. We waited and then they recommenced the application, but never returned to the higher rates of application. It just took each successive application that much longer. After the completion of application one, I was OK for a while, but then we saw my temperature begin to rise. A few tenths per hour and then 1+ degrees per hour. After I passed 101, they became more proactive, applying more controlling drugs (I forget what) and having me eat ice continuously. The fever stayed below 103 for a few hours and finally broke about 4am and dropped. All appeared to be initial serum response or sickness and somewhat expected in a lot of people. After that I had three more daily ATG applications, all at the slower rates and tolerated fairly well. As most know, loads of preventative drugs, anti-fungals, -biotics and -virals, plus steroids, etc. and continuous IV's running. The next challenge was water weight gain from the steroid impacts and all the fluids. I gained 15 pounds within about 4 days and was miserable. I couldn't eat or drink much, had some difficulty breathing due to the compaction and my blood pressure shot up! (normally about 115/50 to a top of about 173/102). They finally applied diuretics to help pass some of the water, but today, 8/3, I'm still 9 pounds over what I was pre-entry and still retaining fluid and the BP is still up, but appears to be slowly dropping. (~134/78).

I took several platelet transfusions, whereas my plate's dropped to 5 on two days. Also, one unit of RBC's when they went to 2.41, although for me historically, that was no big change from my norm. I tolerated the matched-type transfusions well. My biggest problem with all of that is that in the base case I have difficult veins to find and tap (deep, small and they roll). When the fluid retention began to grow, it made vein location and tapping even harder and took multiple attempts each time. Ouch at 1am!

I was discharged on 8/2, with all the follow-up instructions and plans. All very well laid out and documented by MD Anderson's keen staff. They also coordinated an pre-packaged all of my follow-up, daily meds and we picked them up at their pharmacy on the way out. A leukemia specific pharmacist came in the day before and we went over every drug, what it would do, why,how to use and precautions. She was great. I'm now on all three prophylactic drugs, plus the ongoing Cyclosporine, Prednisone, plus agents to settle and protect the stomach and pain/nausea as needed. I will get a Pentamidine injection in about 3 weeks to protect from lung infection.

I went for my first local lab follow-up today and the counts are good. Especially for me, vs. my normal history. Most things are above where they've been for the last 3-5 years! Not normal, but remember, I'm apparently somewhat of a unique case in their eyes. Good or bad! No need for immediate transfusions today. I am to go for CBC labs 3x/wk for 2 weeks. We'll transfuse, as needed, at a platelet cutoff level of 15 and/or a Hemg level of below 9.0. If all goes well, I should drop to CBC's 2x/week after that and then we'll keep monitoring. I go back to the main MD Anderson Clinic and my primary Doc on 8/25 to take an overall look. In the interim I will use their satellite facility near my home for everything else, which makes travel a lot easier. A local hospital ER, associated with the the local MD Anderson satellite facility, can perform emergency or prompt transfusions, with appropriate typing confirmations each time, if I get into a bind. That's comforting to know.

(contined in a next Part 2)
********************

[StuM]

StuM ATG experience Part 2

So how do I feel. Overwhelmed, scared, in and out of control at the same time, blessed to have a wonderful, supportive wife and so many wonderful friends and family to encourage me along and fortunate to have an exceptional medical team guiding and watching out for me. It's an emotional roller-coaster. I know we should never simply let our counts or numbers rule our outlook or emotions, but I sure do scrutinize them every day. Each CBC draw is entered with trepidation. Are they good, bad or simply the same. What is the rate and direction of relative movement, where will they go next? What can I do and am I doing to help or hurt? Am I eating the right things and doing the correct things? Can I help the process along a bit? When will I feel comfortable re-starting a mild exercise routine? All in due time, I suppose.

Finally, as a precaution, I am severely limiting my public outings, especially to any place crowed. A mask is with me at all times and hand sanitizer is always in the pocket. Plus a bottle in each car, every room in the house, etc, etc. Our pets are cleaned and brushed every day and banned from certain rooms. We have electric air purifiers running in the bedroom and other key rooms. I changed out the HVAC filters. I severely limit outside (yard) exposure, due to the current heat wave and the propensity for dust, mold and the high humidity so prone to this region. Food is all well cooked and thoroughly cleaned. No raw anything and no skin-type fruits. My wife has been great about this. We use throw-away hand towels and drinking cups in every bathroom and kitchen. I replaced toothbrushes and other dental hygiene tools. Bath towels are washed each day.

It's still daunting and so new to me, but I wanted to share and hopefully help and share with others. As with all of us, we hope for good progress and outcome. I just retired after 36 years of work and I truly want to enjoy the fruits of a very hectic, stressful work-life. We visited our son, in CA, just before the procedure, to be sure I could have that needed contact. It was such a wonderful visit and reminded us of our strong bond to our children. He's now a responsible adult and our pride and joy. I also still have a strong urge to give back more to my family and others and need the time and health to do that. I have gained so much, from so many in my lifetime, that I owe it back.

Many years ago, upon my birth, I was abandoned by my birth mother. It eventually became a private, sealed adoption case. Many years later I learned most of that unusual story, as I tried to find background for a possible bone marrow donation from any possible blood relative. It's a long, convoluted story and was not as callous as it may initially sound. Yet I was an abandoned infant, alone, at 3 days of age and foster-homed for a year.
They didn't know what to do with me and had no legal release to act. Thankfully, a wonder couple came along seeking a child such as me and my "family" was formed. They not only shared their fine name with me, but also a wonderful, story-book life. I lost that all-loving father 5 years ago at age 90 and unfortunately just last week I lost my wonderful mother, at age 95. I was her lone care-giver and family supporter. It was the least I could do for the woman who unconditionally opened up her heart to me so long ago. Due to my condition, I unfortunately could not be there at her bedside at the end. I did, fortunately, visit her last month (she was in a nursing home, out of state). Being recently retired, I flew to her every month this year. We also had Hospice attending to her and they understood and supported my late travel restrictions. So it's been a very emotional week for me, all around. I suppose the good Lord throws a lot of challenges at us and our true measure is how we deal with them. I hope I pass the tests or at least make a darn good go of it.

My very best wishes to all who are facing similar challenges. I will try to update my journey, as things evolve. Take care and be thankful for all that you have experienced and for all those wonderful human interactions you encounter. Make the most of each and every day we have.
Stu

[Neil Cuadra]

Thanks for sharing your story, Stu. Like many of us, your journey involves family connections: wife, children, and in your case your birth mother and the parents who raised you. Even with all you've been through, you are very positive. Good luck in your continuing journey.

[StuM]

Thanks for your words Neil. They are so true.
A bit more re updated details...
I had to re-enter MDA yesterday, via the ER due to complications. Severe, uncontrolled headach as I wentbto bed, increasing fluid retention in my legs and then complete bladder blockage, with substantion blood outflow, vs urine. Very painful! MDA got right on it, but due to uncertain causes, have admitted mevagain. Checking potential related or unrelated ATG and Cyclosporine conditions. Heavy duty IV paid killers, many more meds and a catheter for continued draining.
I guess I'm back in for a few days while they work to get things determined and corrected.

We march forward.
StuM