I realized it has been a few days since I updated the blog. The usual whirlwind of doctors’ appointments and tests has followed me this week. On Thursday, I had my pulmonary function tests and the results only verified my known asthma diagnosis but nothing else of particular concern. Then we traveled onto Indianapolis for my Infectious Disease (ID) appointment. My ID doctor has been very gracious to consult with my local doctors and provide his expert opinions.
Most of the appointment time was spent on him devising a complex rotation of drug schedule. He is attempting to prevent drug resistance and provide fungal, gram negative and gram positive coverage for me that varies each week. This would be a complicated undertaking if I did not have drug reactions and require drug desensitizations, however, with my drug challenges, this rotation will be timely, costly, and another “medical to do” to add to my ever-growing list. In addition to the drug rotation, he recommends monthly sinus endoscope, monthly chest x-ray, monthly sinus x-ray, gram stains, silver stains, bacterial and fungal cultures. I will continue receiving the IVIG treatments every 28 days and Neupogen injections as needed.
The drug recommendations are as follows:
Daily I will continue taking Acyclovir (antiviral) and Posaconazole (antifungal) as my preventative medications.
WEEK ONE:
1. Desensitize (IV) to Zyvox on Day 1 and then take 7 days of Zyvox (oral).
2. Desensitize (oral) to Cipro on Day 1 and then take 7 days of oral Cipro.
3. Take Amphotericin B intranasal washes twice daily.
4. Radiation on M-W-F if I decide to pursue that route.
WEEK TWO:
1. Take Amphotericin B intranasal washes twice daily.
2. Take Tobramycin Intranasal washes three times daily.
3. Sinus Endoscope – gram stains and cultures
4. Radiation on M-W-F if I decide to pursue that route.
WEEK THREE:
1. Desensitize (IV) to Tygacil on Day 1 and then receive 7 days of Tygacil daily IVs.
2. Take Amphotericin B intranasal washes twice daily.
3. Radiation on M-W-F if I decide to pursue that route.
WEEK FOUR:
1. Receive IVIG treatment on Day 1.
2. Take Amphotericin B Intranasal washes twice daily.
3. Take Tobramycin Intranasal washes three times daily (for a total of 10 syringes of medication daily inserted into the sinus cavities).
4. Radiation on M-W-F if I decide to pursue that route.
5. Monthly chest x-ray
6. Monthly sinus x-ray
7. Sputum gram stains and cultures
REPEAT IT EACH MONTH (with the exception of radiation which will be for 4-6 weeks).
The original plan was to begin this rotation on this coming Monday. I was pleasantly surprised at the ID office, my temperature was 96.8! My normal temperature is 97.4 and I had not achieved that in months. Thursday evening I noticed less coughing and Friday morning, my temperature was again 97.4 and I did not cough for my normal two hours upon awakening. A moment of epiphany! I began the oil of oregano on Wednesday evening while I was at my family doctor’s office. Hmmmmm…….was this off-the-beaten-path oil of oregano treatment attacking a pathogen that modern medicine had found elusive to eradicate? So, I called my family doctor on Friday morning and she agreed that we will hold for one week on initiating the four week drug rotation plan to see if the fevers continue to stay away and if the cough continues to improve. Obviously, if the fevers or cough worsen, we will begin the drug rotation sooner.
For those of you who embrace alternative therapies as I do, I am also taking goldenseal, garlic, elderberry, olive leaf extract, and tea tree oil – all with noted antifungal, antibacterial and antiviral properties. Just call me Herb! The other supplements I take are Vitamin B3 (to help with neutropenia); Vitamin D3 (15000 IU); fish oil; Scutteleria; Astragalus; a good multi-vitamin; DHEA; Alpha lipoic acid; garlic; Resveratrol; probiotics, HCL; Coenzyme Q10; and a rotation of Green Tea Extract and Curcumin.
My milk experiment continues. We rechecked my T-Cells last week but I have been on 4 weeks of IV steroids, so it will be a surprise if this check reveals that the milk has increased the T-Cells (since steroids reduce T-Cells). Also, on Monday, I will receive the first of my vaccines as suggested by the NIH team – we will begin with Prevnar – the pneumococcal vaccine given to babies. It will be the first of four immunizations to see my immune system will mount any kind of response (doubtful) to vaccinations that might help me fight off some of the more dangerous infections. Next week, I will receive the first of four HiB (Haemophilus) vaccinations. I know – I am reverting back to my infancy!
It is the overwhelming consensus of my very experienced medical consultants that span from my hometown to around the globe, that low dose splenic irradiation has the potential to knock back the leukemia to some degree and inflict the least amount of complications on me. Splenic radiation does have the risks of further damage to my marrow, secondary malignancies, reduction in my hemoglobin, platelets, T-Cells, and neutrophils. While most treatment of this leukemia will further worsen immune suppression, a couple of my doctors are speculating if we can reduce my tumor load (since most of my tumor load is in the spleen and bone marrow) then my rate of infections MIGHT lessen. I am praying – I don’t want to make this decision until God has made it crystal clear to me that I should pursue this path. If I feel so led, I will receive radiation treatments three times per week for 4-6 weeks.
Lastly a reminder for family and friends who live nearby. Flu and cold season is almost upon us. Right now several nasty viruses – gastrointestinal and cold-like/chest congestion – are rampant in our community. Please remember if you or a family member has been ill or exposed to someone who is ill, it is vital that I am not around you. My oncology nurses warned me last week to ramp up my awareness and to try to protect myself from viruses that I don’t need on top of bacterial and fungal infections. Flu shots are available – the recommendation is for all of my family and friends to have flu shots - but I will never insist upon that because it is a personal choice. Some reports have suggested a daily dose of Vitamin D3 can prevent the flu, so if you aren’t a flu shot embracer, Vitamin D3 might be a healthy, safe alternative for you. As flu season approaches, once again, I will be in isolation and not able to leave home. If it is a dangerous flu season, visitors to our home will probably have to don masks when visiting. Thank you for your understanding and for your help to protect me from contracting additional infections.
Please agree in prayer for me that I will be in perfect peace if/when I am to move forward to begin radiation and that something that I am taking will strengthen my battered down immune system.
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