Wednesday, September 19, 2007

Lots to Think About, But Nothing to Worry About(?)

Strange several days. Last week Tuesday, I had my scheduled blood tests followed by a CT Scan my doctor uses to keep track of my internal nodes (yes, I am aware of the controversy of doing this because of the increased radiation and I have mixed feelings myself). My blood work actually looked really good, particularly in light of the slightly crappy way I have been feeling. Several times now, the worse I felt, the better the blood looked. My platelets climbed back up above 100! Of course the white count and lymphocytes are still climbing, but that is expected. As Karen is fond of saying, "stupid disease."

Because of a simple question I asked and the um, not too awfully bright clerk at the desk, I spent three hours waiting to get my CT Scan. When I asked the clerk if she was sure the paperwork I just signed was correct because it didn't indicate they were scanning my neck, she asked why I wanted the neck done. I told her my hematologist/oncologist doctor usually scans the neck because I have node involvement there, too. She looked at other papers and said, no, the doctor didn't order it, but she would check with him. I said, "OK, but don't worry about it." I overheard her say to someone else, "This guy's neck is hurting and he wants that scanned too." I never said anything close to that! Three hours later I was still sitting there. To try to make a long story shorter (not my strong suit), she finally said they couldn't get in touch with my doc because he wasn't in the office and I would have to come back the next day. I told her to just have them do what my doctor ordered. She said I would have to come back because I had now "missed my slot." I asked her why they just couldn't squeeze me in? She replied, I had to come back, otherwise they would have to charge my insurance differently because they only had a few slots for the cancer clinic and I missed mine. HUH???? I'll skip all the details, but I did remain calm... sort of... and a supervisor finally stepped in, said that was ridiculous and I was taken in to get my scan in less than five minutes.

Late the next afternoon my phone rang. It was Thomas, one of the nurses from my hem/onc's office. He apologized for the mix up the day before. I told him it wasn't their mix up, it was the girl on the desk at the testing facility. He then said Dr. Netaji was going to call in a prescription for the antibiotic Levaquin and wanted to know my pharmacy. I asked why and told him I was already on antibiotics since the previous Friday for a gum and tooth infection. He asked what I was on and the dosage and then said he would check with the doctor and call me back. When Thomas called back, he said I was to continue taking the Amoxicillin and check my temp every few hours and call if my temp went up. Also, I was to call the next day to tell them how I was feeling. I asked why, and he said the scan showed "infiltrates in my lower left lobe." I said, "Oh, OK" and hung up. THEN I wondered what he meant by that. I told you before, I am not too quick sometimes.

So, I did what I do when I don't know what the doc means. Uh, no, I didn't call back, I went to Google. There I found that most of the references indicated it meant pneumonia. But there were a couple of sites with references I liked less than that option. They indicated a different type of lymphoma than what I already have. Here are extracts from what one site said about a diagnosis for a fellow with lung infiltrate and no symptoms:

  • "Extranodal marginal zone lymphoma (previously known as MALToma). Primary pulmonary lymphoma is defined as a clonal lymphoid proliferation affecting one or both lungs (parenchyma and/or bronchi) in a patient with no detectable extrapulmonary involvement at diagnosis or in the subsequent 3 months. Primary pulmonary lymphomas are rare tumors comprising about 3% of all extranodal lymphomas, and only 0.5% of all pulmonary malignancies.... MALT lymphoma cells originate from the marginal zone B cells.... A total of 30 to 40% of MALT lymphomas has been reported in patients with preexisting autoimmune diseases, including Sj√∂gren syndrome, rheumatoid arthritis, systemic lupus erythematosus, .... and in settings of immunodeficiency. settings of chronic antigen stimulation, including infections and autoimmune diseases." (bolded by me for added emphasis)

I didn't like the sounds of that. CLL/SLL is a B cell cancer. CLL and SLL also make you immunodeficient. I have had lots of lung infections, including bronchitis and pneumonia earlier this year. Yikes, the blessings and curse of searching the Internet.

The next day, I called Thomas to tell him I was still feeling fine and asked him exactly what this all meant. He said I have pneumonia. I asked him if he was sure and he said yes, I had fluid in my left lung. When I asked him why I didn't seem to have symptoms, he said it was just because the "bugs" hadn't started growing in the fluid. Maybe the Amoxicillin was holding them back. OK.

This Monday I had my appointment with Dr. Netaji. He reaffirmed I had pneumonia. When I asked him how I could have pneumonia without any, or few, symptoms, he said it was because my immune system is so low so it is not reacting properly. That answer doesn't make a lot of sense to me because I know folks with very low immune systems get very ill with pneumonia. Anyway, I am getting a chest X-ray tomorrow, so we will see what it looks like then.

He then went over my CT Scan. Seems like most of the lymph nodes in my chest, stomach and groin have doubled in size since last time. I know the ones in my neck are getting bigger, I can feel them and it makes it feel like the beginning of a stiff neck. Even though it wasn't ordered, the test did get a partial picture of my neck, and affirmed they are growing there too.

He said I was getting very close to needing more chemo and thought it would be a good idea if I got in touch with Dr. Wierda at MD Anderson in Houston, to see if there was anything new or any clinical studies I might be eligible for. He said it might be worth a trip to Houston.

Also, because I have had another ear infection, tooth/gum infection, and this pneumonia just since the last time I saw him, he is going to get in touch with my new insurance (TriCare Prime) to see what their requirements are to cover the $10,000 treatment. Also, he said I would need an infusion treatment once a month. My old insurance required two infections within a year and IgG levels below normal. They also didn't fully cover cost unless I was in the hospital to get it. Now I have had eight, maybe nine, infections since January, including pneumonia twice and when he checked my IgG level at the beginning of May, it was 438 (normal 723-1685). He hasn't tested it since then. Now, Dr. Terry Hamblin, a renowned CLL expert whom I greatly admire and respect, posted on this blog in May: "The clinical trials have only shown a benefit in CLL for patients with IgG levels less than 300 who have had more than one bacterial infection in the past year." I forgot to mention that to Dr. Netaji.

So, lots to think about and try to figure out.

Oh, and I am going to a Periodontist on Friday because the gum infection hasn't fully cleared up since I finished the ten days of antibiotics.

Oh, and I upset my youngest daughter and didn't mention to Dr. Netaji I was very sick over the weekend with severe stomach problems. Actually, I have had the 'runs' for a couple of weeks now, but not like this weekend when it was severe and constant and with nausea. I didn't want to sound like a whiney baby!

Oh, I think I will take another nap now.


Grateful said...

Sorry to hear of the new developments. What a PITA!

Marc said...

Damn John! It doesn't sound like you're feeling fine, pneumonia, more infections, diarrhea etc.

And on top of that you have to worry about what your insurance company will authorize for treatment. [Isn't the American health care system wonderful?]

I know I'd sure be whining like a baby, and raising holy hell!

Now I've got two people to be concerned about, not counting myself.

justme said...

Sorry I haven't gotten over here in awhile. I love your writing style! BTW, I do this kind of thing ALL THE TIME too: (haha!)

"I asked why, and he said the scan showed "infiltrates in my lower left lobe." I said, "Oh, OK" and hung up. THEN I wondered what he meant by that. I told you before, I am not too quick sometimes."

After reading your post here, I remembered something Chaya wrote awhile ago about how CLL patients don't always get the "feeling ill" symptoms that other people get. It's the "Editorial" near the bottom of the page here:

Take care, John!

Brother Bill said...

If I had to deal with all the crap you've been dealing with I'd have an upset stomach and the runs as well. I'm telling you I found guided imagery meditation to work wonders. (that and the accupuncture I was receiving at the same time.) It brings peace of mind and a sense of being in tune with what is going on in your body rather than feeling out of control. To feel the energy in the Chakras and experience what that can bring to you. Even if it does nothing more than relax you for a few minutes so that your brain and body and spirit have a few minutes to regroup and approach things from a differnt perspective. As you know I had no immune system at one point and had I not had the fortitude and determination to not accept this as a slippery slope to immune related illnesses I would quite likely not be here today.
The power of the mind is amazing, combinded with proper medications and a spirtual journey into the healing state of mind is a very powerful force. Most importantly this is not the spritual search we receive on Sunday mornings. These may indeed be comforting to some but they fail to address the individual on a cellular level. It tends to give decision making into a being out there watching over us when indeed the power of our brains and our bodies are locked within.And of course nutrition and exercise. Your body needs the energy to fight and needs to be fueled with healthy foods for the fight. And I cannot stress hard enough the fact that the doctors do not have all the answers. We are all individuals and what works great for me might not float your boat, but I would encourage you to try to float your boat before the boat is too full of holes. May your path be smooth and the journey one of comfort and hope. And when it's not just shout 'enough already, I'm now taking charge!!!!!!!!!!!!!!! BREATHE, Be strong, and BREATHE some more. (and know that you are loved.)love,Bill & David

Sue said...

Sorry to hear about this.