Tips to prep for IST in hospital

[Bigthrowdown]

I am a 40nyear old male recently diagnosed with Aplastic Anema. In a month or two I expect to begin the first round of Immunosuppressive Therapy.

I was told this would be done in the hospital and takes anywhere from a week or two up to three or four weeks. I know that it will take several months to see if the treatments are working.

The doctor informed me about serum sickness. Is there any tips or tricks that might help with the process overall? Any thing I could do when I return home to make life easier?

For ATG treatment (Horse, I believe will be used) will I need a PICC line or chest device? It seems like the chest thing would be easier.

I'm hoping to bring a laptop or some books if possible.

Any advice or tips would be helpful.

[Marlene]

Welcome to Marrowforums. My husband did not do the ATG treatment so I can't help you with tips regarding serum sickness, etc. but there are many threads you may find helpful on multiple topics already on the forum. Use the search tool at the top to help you explore some of your questions.

Having a picc line or central line is very helpful especially if you are getting transfusion. John had a central line for his treatment. Most here find that keeping track of their blood counts and getting copies of all their lab results are a good idea. That way you can see trends in your blood counts. You can get really obsessed with CBC's and pin too much importance on just CBC test. So it's always good to watch trends because blood count jump around and don't always follow a steady upward trend. That being said, I would make sure to have a baseline of all of your test prior to starting treatment. That would include things your CBC, Chem panel, BM biopsy, Iron(FE) level, serum nutrient levels on B12, Folate, vitamin D, copper and zinc.

Be sure, if your haven't already done so, to discuss transfusion thresholds for Red cells and platelets. John got red cells when his HGB was 8 and platelets when they were 10K.

This is a frustrating disease to treat. Seeing improvement can take a while so don't get discouraged.

Wishing you the best,
Marlene

[Hopeful]

Hi BTD,

Do you have MAA now? What are your counts? Are you transfusion dependent? I ask because if you have SAA/VSAA, you should start ATG quickly to minimize further damage to your marrow.

Be sure you receive your treatment at a hospital with experience, in case you do have an unusual reaction. I would ask for a test dose of the serum to determine whether you need a slower infusion rate or if you are severely allergic. You can also ask for the hospital's treatment protocol ahead of time.

I had a central line. Your body will eat through RBCs and platelets while getting ATG.

The first night of ATG is the worst. Each subsequent dose will hopefully get easier. Your ANC will bottom out shortly after the ATG starts, so be vigilant that everyone (nurses/doctors/guests) is following proper sanitation protocols!

Serum sickness is controlled with prednisone, which is part of the standard treatment protocol. If all goes well, and you don't get an infection, you should be out in 1-2 weeks. If you get an infection, this can turn into months, so be vigilant!

Hope all goes well!

[Bigthrowdown]

Thank you for all the great advice. I'm not yet at severe but my numbers are dropping so they are going to do all the prep work for a Bone Marrow Transplant but my first treatment will be Immunosuppressive Treatment.

My Hematologist said based on the decline of all three lineages that he expects to have to begin treatment in the nextb2-3 months. My neutrophil numbers were decent but my platelets have been running around 47, but declining. My RBC numbers were low too but I don't have them right here with me.

I have not had to have any transfusions yet, I was given some platelets at the start of the year for a small surgery. That was what lead me to investigate and discover AA.

I am probably going to seek treatment at the Moffitt Cancer Center in Tampa, although I've considered Dana Farber.

Does anyone know how long the recovery is after IST? Once you are out of the hospital, how soon can you get back to work?

I'll look around the forums some more as they are a great resource. Thanks to everyone for their responses.

[Hopeful]

Have you had a BMB yet? What was your cellularity? How is your HGB? A platelet count of 47 is not too terrible in the AA world, even after treatment. So, maybe the doctors are hoping the marrow can turn things around on its own during the next 2-3 months.

In the meantime, do all you can to help. Take a good look at any medications and supplements that you are taking. Even some teas have been implicated for AA. If you drink alcohol, stop, as it suppresses the marrow. Be cautious around sick people.

Everyone is different with this disease. I felt better upon returning from the hospital after IST then I did before I checked in, but it is all relative. I was still transfusion dependent for a while afterwards.

It is a long slow road to recovery. When you return to work will depend on your job and which cell lines are the slowest to recover.

Hopefully your marrow is able to turn things around! Best of luck!

[Bigthrowdown]

Yes I've had 4 Bone Marrow biopsys. Im like a pinata but the prize inside is no bone marrow!

[Marlene]

I echo Hopeful's comments. Now is the time to make sure to look at any medications you may be on and nutritional issues. You have a small window of opportunity to assess and address these issues which may help. Also, if you have any gut/digestive issues, this can play a role in bone marrow disease.

Also, get at least one second opinion from a doctor who has experience treating SAA.

I'll send you a private message with some basic info on specific nutritional issues that may play a role bone marrow failure.

[Bigthrowdown]

Thank you very much. I've seen a hematologist that has treated this before, and had a consult at the University of Florida Shands Hospital's Bone Marrow Transplant Teams.

I also saw a hematologist that hadn't treated AA before and caused me to waste 6 months.

My number had been slowly declining over the last 2-3 years but the decline rapidly accelerated.

I'm meeting with Moffitt's Bone Marrow Transplant Team soon. The problem is I'm 40. Older than pediatric and young adults but not elderly. I'm probably going to do IST as my first round treatment. I also have to see how good a match my brother is and have him tested (HLA testing I believe).

If I could stay stable for 2.5 more years
I would be retired with health insurance. I'm not sure that would happen.

Hard to decide if I go right to BMT if I have a good match and hope it's curative instead of fatal. Or do I try IST, my concern being that that's more time that I'm weak and then add a BMT on top of that.

Sorry for the ramble. It's a lot to get a grasp on.

[Hopeful]

Hi,

I was diagnosed at 42 and had sibling matches, but my doctors' chose to go with IST for me. I am forever thankful that they did, as here I am 10 years later. Be sure to check out the statistics for Transplant vs IST for those > 40.

The recovery from transplant will take a lot longer than the recovery from IST. Some transplant regimens include ATG for preconditioning, if that is any consolation.

There are some great videos on AA, IST, Transplants, and the latest research from experts across the country at:
https://www.pathlms.com/aamdsif

Hope your body can stay stable or turn this around. It is possible.

[Bigthrowdown]

Thank you, I've seen the stats for transplant past 40 and they aren't pretty. Well hopefully they can work on uploading me to the cloud or into a bionic body.

[Bigthrowdown]

It seems the protocol for Bone Marrow Transplant care is that you have to live within 30 minutes of the transplant hospital for a time period after the transplant.

Why is this?

The explanations I heard were that you would need specialized treatment for any infection or emergency. I have family that lives about 45 minutes from a hospital that I may seek treatment at, and the transplant team doctors basically said that distance would be too far.

Are infections so fast acting that an extra 20 minutes could be life threatening? Do they want you near their hospital so that if you are in medical need and unable to communicate the default hospital he paramedics will take you to is the transplant hospital?

It was a question that I forgot to ask and will ask next time I meet with a doctor.

[Marlene]

John had to be 30 minutes from Hopkins too. At any time he got a fever of 100.5, we had to call and then they would have you come into the hospital. At Hopkins, you skipped the ER and admitting, and went directly to your room on the BMT ward. You can waste a lot of valuable time in the ER/admitting.

Infections can turn sepis very quickly when you are so immune compromised and they need to do blood cultures and start treatment right away. PICC/Central lines can become infected and also cause an infection in the blood.

You are on a lot of meds prophylactically to prevent infections and spiking a fever means they either need to up the meds to a treatment level or add in a new one.

For John, they also did a chest X-ray. And you can't take tylenol to reduce the fever until they get things under control.

I think we went in twice and by the time we got there, the fever resolved. No trouble found.

But there was a period when he was an inpatient where he would spike a fever every day for a few hours for about a week. Ice packs were needed for a few of them. They never knew why but had to do blood cultures every time. And he was on every meds for just about any type of infection at a treatment level.

We stayed in an apartment in Baltimore. When he was an outpatient, he took his temp quite frequently throughout the night.

[Bigthrowdown]

Thanks you all very much for the information! Numbers are holding steady since the last visit.

The infections becoming septic very quickly makes sense but no one ever explained that as the reason. Thank you!

[kubu]

Bigthrowdown, how are you doing since late December?

I know you didn't post CBC other than platelets at 47. Given that, and that you were given some platelets prior to AA diagnosis for a small surgery, is it the platelet count which is your biggest problem?

You mentioned:

I'm not yet at severe but my numbers are dropping so they are going to do all the prep work for a Bone Marrow Transplant but my first treatment will be Immunosuppressive Treatment.

When you wrote that (on December 2nd) I'm curious as to what your CBC numbers were. Can you post them?