1 year after high dose cyclophosphamide treatment

[amandana]

Hello,

I was diagnosed with SAA in February of 2011, I underwent the fairly new promising treatment high dose cyclophosphamide. I suffered from Iron Deficiancy since 2008 and in 2011 I was experiencing symptoms which I thought was the flu and low iron but as it turned out I had SAA

My blood counts at the time were as follows
HGB: 4.0
Platlates: 10
WBC: 0.5
Neuthrophils: 10%

Today's results came too:
HGB: 16
Platlates: 145.000
WBC: 3.5
Neuthrophils: 55%

I've fluctuated between ranges but have been growing steady since this past February. I've had some lasting complications due to SAA and the high dose treatment. I was diagnosed with Type 1 Diabetes in July 2011, six months after treatment with high dose cyc, as my body began to make new marrow and my counts were improving my glucose levels started too spike up as with my HGB my a1c at diagnosis was 13, it seemed that my HGB increased rapidly where my platlate took the longest and still not within normal ranges today. I now manage my diabetes with a pump and I am pregnant with my second child. Anyone else have complications if so which kind and how do you deal with it?

[Marlene]

Hi Amandana,

John, my husband did the HiCY at Hopkins back in 2002. He is in a stable, partial remission at this point. HGB in the 11.8 - 12.5 range, platelets are around 120 and whites are normal. It took two years from treatment to get transfusion free. The drugs used while he was waiting for his white count to kick in really messed him up. It took him about 84 days for his white count to kick in. Needless to say, he had some serious issues during that time. He also was one of the few to develop hemorrhagic cystitis from the cytoxan. His bladder bled for 6 months. The first year out from treatment was difficult. So aside from the still lower than normal (but very livable) counts, he continues to deal with peripheral neuropathy (nerve damage) and endocrine issues (no testosterone).

The nerve damage was very bad in the beginning and really impacted his quality of life. But through alternative therapies and targeted nutrients, we've been able to improve that a lot.

He had other issues too, but over time, the body does heal. The nerve damage was most likely do to the antibiotics and not the cytoxan. The endocrine issues are most likely a combination of things but he had really high iron stores. He's still dealing with that.

We have taken many natural approaches to healing. The biggest roadblock durning that time was the iron overload. The chelation meds really messed with his digestion and kidneys. And the iron does a number on your organs over time.

Nutrition is important. He also does some alternative therapies as well. We do what we can to reduce toxic exposures. John also uses a topical, bio-identical testosterone cream.

Not everyone ends up with post treatment issues. Unfortunately, they cannot predict how a person will react to the drugs. We now know that John's body does not like drugs and he does everything he can to avoid them. It always amazes me when you meet people who can tolerate them with little or no side effects.

It looks as though your counts are, for all practical purposes, normal. For John, 145K platelets would be considered a low normal. Odd thing about the Type I diabetes though. How do they explain that? But great new on your pregnancy.

[amandana]

Diabetes Type 1 is an autoimmunue disorder and Cytoxan is an immunosuppresive drug ,its a destruction of the insulin producing beta cells in your pancrese. Some chemicals and drugs destroy those cells causing little to no insulin production which control glucose levels in your bloodstream. My sugars they noticed and my a1c were higher then normal from about april but i was on borderline, but my a1c which shows your sugars within the past three months was high from april too july when I got diagnosed it went from 10 to 13 in a matter of a few months. As with your husband the drugs effect us differently. Type 1 is very common in terminally ill patients and after a very terminal illness such as Anemia. I had other complications as well I developed really severe punemonia after my treatment which landed me in ICU they put me in a coma which I didn't come out for four months. The punemonia I had complications, I had acute respiratory distress syndrome which is a severe complication of punemonia and sepsis.