Big 3 and Ongoing Bloodwork for MAC

Hello Kay, as you know I am a great googler .. I just found:
http://medical-dictionary.thefreedictionary.com/Antituberculosis+Drugs

Rifampin may temporarily lower the number of white blood cells. Because the white blood cells are important in fighting infection, this effect increases the chance of getting an infection. This drug also may lower the number of platelets that play an important role in clotting. To reduce the risk of bleeding and infection in the mouth while taking this medicine, be especially careful when brushing and flossing the teeth. Check with a physician or dentist for suggestions on how to keep the teeth and mouth clean without causing injuries. Put off any dental work until blood counts return to normal.

BUT THE KEY WORD IS TEMPORARILY .. AND RETURN TO NORMAL!! So I wouldn't worry too much about this .. talk to your doctor about it of course .. but it sound like it is just part and parcel of your journey. Just keep on .. keepin' one girl! You are doing a good job of staying positive and I think that is key and crucial for the journey we are all on! Sending you a hug! Katherine

Kathryn, be sure to keep us posted! Hugs! Katherine

Kay, be sure to keep us posted! Hugs! Katherine

Terri .. love this one! Katherine

Thank you for always being there for all of us Katherine.

I got the results of my third cscan today. Compared to the one I had in June a 7 mm nodule in the right upper lobe is now 8.6 mm. Again, I am quoting the report, it does appear cavitary in nature and suspicious for mycobacterium arterial-venous malformation complex. On a previous exam (June) a 9 mm nodule was observed along the course of the major fissure on the right; this is again evident and measures approximately 10mm. The rest of the report is the same about atelectasis/scarring/bronchiectasis right upper lobe unchanged.

My question is this: is a nodule growth of this size something to worry about or is it just minor? I have an appointment with my pulmonologist Oct.. 7. I suspect that he may recommend a bronchoscopy now due to the fact that the mycobacterium has come up on two reports now. Do you have any thoughts?

Here are some good thoughts - the children at school are being angels - can you believe it - grades 8 - 12 ? I have started my 20th French Academic Team and the students are enthusiastic as ever. And finally, I do some writing on the side, and a local paper may publish a story of mine in November. They published one last June. No more book writing - just keeping projects realistic. Most of all, I am so happy that I am able to keep up with work and enjoy home and rest and be satisfied - and finding new friends who understand.

Hello Kathyrn, I just can't have an opinion on the nodule growth size .. I am just not a pulmonologist. All I know is what I experience with Dr. Aksamit when he looked at my various Xrays and CT scans .. he looked .. I always had various spots all over my lungs in my viewpoint .. but I had to depend on his experienced eye to evaluate the difference between the current and the last sizes .. IF/WHEN it made a difference.

Kathryn .. THIS is when our trust factor becomes very importance with our doctors .. when we have to step back and know that we have made a good choice in educating ourselves in choosing this doctor .. NOW we are in their hands. THEY have to evaluate the test results.

BUT that said .. if indeed mycobacterium has shown up on two reports now .. I sure would push the issue to get some hard and fast answers at this point! Below is a list that I put together .. cut and pasted from various sources .. hope you find it helpful! Keep us posted! Hugs to you! Katherine
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

. These questions were written from a patient’s perspective and are not intended as medical advice.
1. What do I have? How do you spell it. Where is it located?

2. Was drug sensitivity performed from a culture? (If not, can it be done while the sample is still viable?)

3. What drugs will I be taking?
a. What is the dosing level for each medication?

4. How long do you expect me to be on the medications?

5. What monitoring will I need? (See examples below)

6. How often will I have:
a. Follow up appointments with you?

b. X-rays/ CT scans

c. Lab work

d. Hearing testing (try to have hearing and vision tests done before starting your medications so they will have a baseline by which to judge any changes)

e. Vision testing

f. Sputum cultures

7. What side effects will I be likely to have?

a. Which should be reported immediately?

b. When/how do I take my medication?

c. Do you have any suggestions for coping with the less serious side effects? (see Treatment Tips from Other Patients for some helpful hints)

8. Will IV drugs be necessary?

9. Will I also need inhalers?

10. Should I use any device? (How often?)

11. Can I still take over the counter medicines/vitamins/supplements? (Be sure to tell your doctor about ALL nutritional supplements, herbs, or over the counter products that you take. These can interact with your medicines, or decrease their effectiveness.)

12. Would I be a candidate for surgery? Why/why not?

13. What if I lose my appetite?

14. What if I feel depressed?

15. Can I exercise? What kind of exercise?

16. What precautions should I take? Activities to avoid?

Some examples of the type of monitoring that may be needed – consult your physician:
Will I need bi-monthly lab work?
Some side effects are especially common with certain antibiotics and need their own specific tests. This is only a partial list:
Ethambutol – color vision and visual acuity - monthly
Clarithromycin – hearing and balance every 2-4 weeks
Azithromycin – hearing and balance every 2-4 weeks
Amikacin – hearing, balance every 2-4 weeks / drug levels and kidney function every 1-2 weeks
Other things to consider:
• Keep copies of all your lab work
• Keep your x-ray/CT scan films yourself, or consider having them done where they can be put on a CD

Kathryn, LOVE your "good thoughts"! I think this kind of thinking REALLY helps our journey along .. congratulations on being a published writer .. WOW! .. that is just great! That must be so fulfilling. You have such a great attitude .. I just know that is going to help you along the way .. keep it up! Hugs! Katherine

Thank you so much for taking the time to provide me with this list of questions which I have printed out. I do obtain all my blood test results and cscan reports. I don't want any "surprises when I visit my doctor who I do trust. I'm a little "down" at this report but have wonderful people (kids/students) to keep me distracted. Here I go! Very best, Kathryn

Hello @kwilbur,
You indicate your latest scan shows "arterial-venous malformation complex". Can you elaborate? Has your doc told you what that is, where it's located, how to treat, etc. I ask because my brother has something similar.

Re: the change in the size of a nodule, that's something to discuss with your pulmonologist when you see him on Oct 7th. You'd want to know specifically what type of NTM you have, is it slow or rapid growing, etec. And a bronchoscopy is the surest way to do that.

Best wishes, and keep us posted.
Paula

Thanks Paula for writing. I thought that the term "arterial-venous malformation complex" was not different from my former evidence of MAC. You have made me think now that I better get more information. Katherine was wonderful in giving me a list of items to ask my doctor on my Oct. 7 visit. Could you tell me the symptoms your brother has? I am having such a good beginning of the school year that I truly want to go on. I share so much in my childrens'(students) dreams - it is a wonderful experience. Well, no self-pity here - just need to find out more. Again, thanks.