Monday, November 07, 2005

Doctor's response - on Sunday afternoon


So far your experience sounds par for the course. Hopefully, we can avoid constipation problems in the future.

You are experiencing to two separate affects of the treatment, one you can feel and one you can't. The sudden changes in the way your body feels (decreased pain and change in urine) are not anticancer affects but the anti-inflammatory affect of high dose steroids. It is normal for them to come and go with the RX.

The anticancer affects are much slower (multiple weeks to months) and you can't feel them...we will be able to measure them with labs when I see you.

Keep up the good work.

condition update - Multiple Myeloma - Thal/Dex - Day 26

[This is an email I wrote to my Oncologist at 3 o'clock in the morning Sunday.

Subject: condition update -- Multiple Myeloma - Thal/Dex - Day 26

Today, Sunday, 6 November 2005, is my 27th day of Thal/Dex. We have a scheduled appointment on Wednesday, 9 November. Since I want to relate a set of details I am writing them out, in hopes that this will allow you to review them at your convenience.

You have prescribed, and I am taking 200mg Thalidomide daily (at night) and 40mg dexamethasone (after breakfast) four days on / four days off.

By Day 10 I no longer needed pain medication. Amazing! And wonderful.
By Day 9 the toilet bowl was not full of bubbles after I urinated. Somewhere, sometime I got the idea that bubbles in the toilet bowl is a sign of protein in urine. Maybe it is not, but it was a big change for me and coincided with the chemotherapy.

Perhaps directly related to the oxycodone, which I have not taken for over 2 weeks, I became constipated and moved my bowels once every 4 or 5 days. Though I have been eating high fiber cereal, lots of fruit and vegetables, keeping my fluid intake high, eating ten to 12 dried prunes nightly and taking Senna-C (4 tablets nightly) on the advice of RN Andrew from your New Brunswick office, I have only reduced the cycle to once every other or third day. My cycle pre-chemo was daily. It is uncomfortable. My abdomen is enlarged and I feel a steady pressure in my bowels most of the time. Most unfortunately I have become a nastily flatulent office mate. Should I continue to use the Senna-C and simply aim for a more ideal dosage level?

My general condition is that I have a bit of dizziness fairly constantly throughout the day. I do not have a weight scale, but I feel that I am gaining weight; beyond the added burden I carry from constipation. My recently purchased 36 inch waist pants hang unwearable in my closet. I am snugly back in my 38's. I believe I am swelling throughout the day. My legs and toes seem puffy at the end of the work day, but are back to normal when I wake in the morning. On the four days I take dexamethasone, I tremble and feel agitated and unsettled. I have had only a couple of fleeting momentary instances of feeling that my legs had gone to sleep on days 22 and 23.

Stressful situations heighten my feelings of dizziness and agitation but it is a very short-term spike and I have been careful to expect the result / avoid many of the typical causes.

On days 23 & 24 (days 3 and 4 of a NO dexamethasone phase), I started having a steady headache from the time I woke up to the end of the day. I took whatever analgesic I could find handy. If it was Tylenol, I took 100mg; Ibuprofen 400mg; Aspirin 925mg -- when the pain became too intense to work. That gave me relief for 4 to 6 hours. I bought some Tylenol now and will take that should the need re-occur.

On day 24, the pain in my sacrum with radiation of the pain down my left buttock, returned at the end of my work day and through the evening. I did not take any analgesic or oxycodone (no oxycodone because I was concerned about aggravating my constipation). I had a couple of cocktails which did help.
On day 24, I again started seeing bubbles in the toilet bowl.
Day 25, I began a 40mg dexamethasone pulse and I had no pain all day. I also may have overdone my use of Senna-C, having taken 4 tablets before sleep and 4 tables after breakfast and had 3 bowel movements during the day. I imagine the dexamethasone also contributed.

Headaches; pain in my sacrum with radiating pain; bubbles in my toilet bowl -- in the fourth week of my chemo -- this appears like a throwback to pre-day ten symptoms. It is clear to me that my present phase of chemotherapy is a three month or possibly four month course of treatment. We are just now completing the fourth week. When you initially described to me the process the Thal/Dex would effect, I recall your description as the following:

What we do is use the initial chemotherapy to stop the multiple myeloma. The goal is to kill it. The myeloma is very effective at pumping away the drugs that will kill it, so we use a technique that will overcome its capacity to pump. This is what we will do for the first three, maybe four months. During that time we hope to kill 99.99% of the myeloma.

Should I understand that the myeloma is presently demonstrating its resilience? Will we see more up and down cycles going forward?

One last note - If you would prefer me to deliver these messages via fax or post to your office in addition or instead of email, please let me know. I want to make my communication with you as useful to you as possible.

Thank you, Doctor, for your care,


Monday, October 10, 2005

So many diplomas!

After the bone biopsy of the sacrum showed monoclonal plasma the oncologist called it myeloma. If there were more than one site, or lesion, then it would be multiple. The only test that gave information about that was the very first MRI. The phrase that stuck out in my mind was "involvement of L4" and I suppose that is what kept the oncologist from eliminating 'multiple' easily. So I was stuck between a diagnosis of single and multiple.

The cure for the foggy diagnosis would be ... [drum roll effect here] More Tests!!

On Monday, the 3rd of October, I went back to the MRI folks who made full pictures of all three areas of my spine: cervical, thoracic and lumbar. It was really a snap. Just imagine laying completely still. Then have someone gently move you up and down through a machine. The machine makes a lot of noise. The volume and vibration is like having your head next to a vacuum cleaner -- for two hours. Except for being noisy as hell, it is easy. The lumbar had to be re-done because they couldn't see the top two vertebrae in the earlier films.

The results came fast. I got a call on Tuesday afternoon from my oncologist. The films were clear. There are several more lesions: some on my spine, some in my thoracic area and at least one on a rib. With the new results, there was no need for a murky diagnosis. I have multiple myeloma.


My appointment with a top level blood cancer specialist was set for Thursday, the 6th. I worked from home in the morning and then made the one hour trip to the super duper tip-top oncologist's office after the rush-hour was past. His office is the busiest medical office I have ever seen. There must have been seventy-five or eighty patients, some with caretakers, in the waiting area. People wearing those green, blue and dark red hospital clothes kept coming into the room to call out the name of their next victim. The victim always responded willingly to the sound of their name. I began suspecting the drinking water had been laced with a drug to make everyone calm and complacent.

I got a pack of insurance forms, releases, medical history forms and papers I had to sign to acknowledge I had been told or read everything else. They didn't give me time to sit and fill them out. Oh, no. They started calling my name and I went into one side room after another. Once for my height, weight, blood pressure and heart rate. Once for a couple liters of blood. One woman called me to sit in her room while she entered the information from one of my forms into a computer. She didn't even ask me any questions or ask me to sign anything. Maybe she just felt lonely. I did; even with all of those people around.

Every time I came out of one of those rooms someone would have taken my seat and I would have to go around to another part of the room to find an empty one. It started to get a bit tiring. Then they took me to the super duper tip-top oncologist's office. I could wait there. Not in an examining room, but rght there in the guest chair of his office. No one to watch me or make sure I didn't try to get onto the office's computer network or anything. After a quick review of my notes so my questions would be fresh in my mind, I started looking around. It was fairly typical for a doctor's office. There were lots of medical journals, lots of files piled on his desk. His bookshelves were full of medical school books and conference catalogs. His walls had his university and medical school diplomas and medical community recognition plaques. But not just the three or four in a regular MD's office. He had more than twenty. And they were all related to institutions that specialized in cancer.

When he came in, he asked me about my medical history. He asked me about how I learned I had myeloma. I almost asked him to read this blog, but I didn't. He seemed kind of short on time. Then he told me he agreed with my oncologist. He said he wanted me to start taking a combination of drugs that have been very effective at treating multiple myeloma. The combination even has a short name, "Thal/Dex".

He said that I needed to take this treatment for three to four months. They will monitor the presence of monoclonal plasma in my blood during this time and expect to see a fairly quick reduction. Next steps will depend on my body's reaction to the treatment.

Well, let's see.

Monday, September 26, 2005

Aw Crap!

My Oncologist just called with the test results.

He said the good news is that there are conclusive results this time. That is, after all, what we wanted.

The results are a positive diagnosis of myeloma. Since there is no evidence of it throughout my body, he wants to call it 'myeloma cell dislasia.' But I had never heard of that since there are basically two kinds described -- single site and multiple site. He said that since there was some evidence that my vertebrae were involved -- the ones directly adjacent -- single site might be inaccurate.

Now he is talking about radiation, cell transplant and getting me over to another group of blood cancer specialists.

Ah, he just called again with their phone number and an overview of what they will want to see from my previous results (MRI films, lab results, etc.). He also wants me to get more MRI done on my back since we now need to discover where else there may be lesions.

I'll try to keep this up-to-date.

Saturday, September 24, 2005

Bone Biopsy #1

Well, right away from the title of this entry you can guess that I had to go for more than one biopsy. TaDaaa! You are right. I won the booby prize.

First of all, a bone biopsy was not the fearsome horrible gut wrenching painful experience everybody from my MD to the LPN who performed the procedure told me it would be.

She laid me on my side on a regular examination table. A quick pinch for the first injection of Lidocaine. Brief circular massage on the spot. The next injection gave me a bit of that searing feeling when she pushed in more Lidocaine. But the last injection I didn't even feel. Once she put in the big needle, I did feel it tap the bone. But it didn't hurt until she had to move a bit further in to get the toothpick sliver of bone. Okay. It hurt. But if you've ever been barefoot and stepped on a sharp stone, you have felt worse pain than that biopsy gave me. At least that is the level of discomfort I had. No biggie. Really.

When I was there to meet my Oncologist the first time, he introduced me to his pet vampire. She is very practiced and I didn't feel a thing when she took 17 or 18 vials of my red stuff. When I went over to discuss the lab results from the biopsy three days later, the Dr had the blood analysis too.

It was a good news / bad news day. The blood work showed no other evidence of any other type of cancer. And they had a small pond of my blood to look for any one of over a dozen different cancers. {Um, yeah. Myeloma is a cancer. I didn't want to use that word earlier. But my new doctor is an "Oncologist" and those are the kinds diseases this doctor deals with. So a new word that fits into a description of me. Anyway, back to the results --} The blood work does confirm that I am anemic. The biopsy, however, is 'non-conclusive' meaning the sample they got did not contain monoclonal cells. That means that if I have myeloma it is probably single site, not the big bad friend of the pharmaceutical industry, 'Multiple Myeloma.' Single site is also called 'plasmacytoma' myeloma.

The bad news is that I won a trip to see a radiologist who will have to use a CT scan to place the biopsy needle directly into my sacrum. Apparently since the sacrum is at the base of the spine there would be a risk of damage to my spine or other nerves if they just 'took an educated guess' to place the needle.

Since the first biopsy was no big deal, I didn't really mind. The news that the myeloma is not in wider circulation is really good news.

I had the 2nd biopsy last Thursday. The small army they had there to hold me down to the table were left standing around without anything to do. When I asked them if my experience was common, they said "No" and "Good thing or we'd be out of work. This holding down the victim until they stop squirming is good work, you know."

I am now waiting for the analysis which should come by Wednesday next week. Hopefully the results will be 'conclusive' and I can hear what they want to recommend as a treatment.

Once I have a full diagnosis, I will go to another Oncologist for a second opinion. I already have the appointment set for the 6th of October with a top-gun at his New York City clinic.

The second set of tests

Both the Chiropractor and the MD related similar versions of the radiologist's "impression" of the MRI. The apparent lesion was .. well, here is the radiologist's note:
  • on 11 August 2005, he wrote "Pathologic marrow infiltration replacing much of the sacrum with extension anteriorly into the presacral soft tissues as well as subtle involvement suspaectd at L4. Neoplasm should be considered including metastatic disease, lymphoma/leukemia and myeloma."
There are a lot of multi-syllable words there and most of them were way beyond my regular vocabulary. In a nutshell, my MD said, "We need to do tests to prove you do not have any of those. None of them are good. You do not want them." He also said that, in his experience, 75% of MRIs ordered by chiropractors turn out to be false positive. I guess he was trying to raise my spirits while taking a dig at chiropractors.

Anyway, he gave me a set of perscriptions for blood tests, urinalysis, extra large leeches and advice to eat well. I asked him if he could recommend a physical therapist to help me strengthen my lumbar. I figured if it was a false positive, it would be best to get on with a course of therapy that would help me reduce the pain. When he told me "No. It is not the time for you to exercise or get physical therapy. Let's do the testing to eliminate the possibility of some of the causes for now" that was when I started feeling kind of shitty -- like this thing was going to get more serious before I was done with it.

Now, he is a nice guy and all. But I really had to listen closely as he built up the information toward his conclusion. I felt like the Lone Ranger's sidekick, Tonto, with my ear down low against the train track listening for the bad guys approaching. A week earlier, when I had seen him after the MRI, he had explained the radiologist's findings. He had talked with me about the need to thoroughly investigate my condition. He said his investigation of would be an attempt to rule out the possibility that the lesion on my sacrum was caused by a disease of my bone marrow. He cautioned me right away that if the blood and urine did not rule out the radiologist's findings, I would be giving bone biopsy samples. That caught my attention. Oh Boy! Wow! I lifted up my head and realized my big chance to benefit from recent advances in medical science was coming right at me like a freight train!

Okay. Fine, I would give all the body parts and specimens the labs needed. We had to find that false positive if possible. The following Monday morning, I found a blood letter who ageed to fit me in right away. She had an open slot just after a troll and before a midget (sorry, little person). The results were faxed out on Wednesday and I went back to the MDs office.

That time my MD was more direct. He said that the blood tests from my general physical and the special ones from the blood letter matched. I gave them my liters of blood and urine on the 11th of August and on the 15th of August 2005. The results were:
  • In both tests mMy hemoglobin was 12.9 (normal range is 13.2 - 17.1 g/dL)
  • RBC 3.96 L then 4.05 (normal range is 4.2-5.8 Mill/mcL)
  • Hematocrit 37.4 then 37.6 (normal range is 38.5-50 %)

He said that meant I was anemic. He asked me if I had been feeling fatigued, run down or dizzy. I could not say that I had. So he hit me with the urinalysis results. There they found "Free Kappa (monoclonal free light chain)" protein. They found a lot of it:

  • Protein total, urine 414 (normal range is 14-119 mg/g Creat)

The serious part, he told me is the 'monoclonal' part. That means one particular type of cell is multiplying out of control. As the cells breakdown, after they've lived their short life cycle, they pass out of me in my urine. Just one of the diseases I did not want to have behaves this way. Myeloma.

I was still in the mindset of a guy who was searching for the false positive. He said he was sending me to an oncologist who would review the tests and likely ask for a pound of flesh, or a bone biopsy if needed. I lost a bit of my optimism after his use of the word 'bone.' As in, "They will place a needle into your hip bone and take out a small sample of bone and aspirate some blood for lab analysis." Still, I wanted to get him back to his former chiropractor kicking ways. So I asked him what were the odds now that the next set of tests would prove that myeloma was a false positive. He said, "To prove the myeloma false positive, we would have to prove the blood and urinalsis were both wrong. That is very unlikely."

Shit. I must have ducked when I should have swerved.

Sunday, September 04, 2005

Back in about April or March 2005

I was playing squash and had to snap far to my right to stop a ball from passing me. Something pinched in my back. I felt a crunching pain grip my spine. My shot made the wall, but I was done. I couldn't keep playing. Basically, I had a typical sports injury.

Besides avoiding the squash court and switching to the orbital strider, I wasn't having much trouble with the injury. The thing was that it didn't get better. The ache was nearly always there and got worse after sitting at my desk, driving my commute. Getting out of bed in the morning was a whole new adventure some days.

Along comes July and I get another birthday. I have learned to take ibuprofen four at a time -- every seven or eight hours. And I get a new doctor and scheduled a physical to see what science will tell me about my condition.

On our first appointment, he asks me if I have anything bothering me. Eight to twelve ibuprofen a day to manage my low back pain, I tell him. He has me laying there already, so he says, "Lift your leg against my hand. Any pain?"
We do up and down for both legs.
"Well, it's not neurological. Motrin or Advil is enough. It is most likely a muscle strain and it will get better by itself."

Well, that sounded fine, but I still had a lot of discomfort in my back. My full phyiscal exam was scheduled for two weeks or so later, so I figured I would take a more assertive line when I saw him again. Meanwhile, I figured I could find somebody who would take my whining more seriously.

After about two minutes of thinking things over, I felt like a couple weeks with nothing but ibuprofen was just not going to cut it. The next day I went looking for a chiropractor. And found one and .. over the next week and a half I got five "treatments." A treatment is three minutes of infra-red and ultrasonic heating of the area, then fifteen minutes under a heat pad. He then twists me like a pretzel and gets my spine to make snap-crackle-pop noises. To which he always reacted with a "Good!"

After the fifth treatment, he asked me if I am feeling less pain. But no, it was pretty much the same. He wanted to 'see' the disks and spine, so he sent me for an MRI.

A couple weeks go by, I was back at my MD's office for the complete physical.. At the end of the blood letting and the application of the leeches the doctor examined me. I let slip I would be going for an MRI. I asked him if he would like to see a copy of the results once they came back. He was clearly keeping his mouth shut about something when I told him I got treated by a chiropractor. He did want to read the radiologist's diagnosis.

The day after my MRI, I got a call from the MDs office inviting me to come over at my soonest convenience. The chiropractor's office called within 30 minutes too. I got to the chirpractor at 11:30 -- the MD at 4:30 pm. They both explain that the MRI showed something going on with the sacrum. It's a triangluar shaped bone between the hips near the end of the spine. It looks like it has a lesion -- a soft spot. And it looked to the radiologist as if it was thickening inward. I needed more tests: blood tests, urine tests and several regular X-Rays of those bones.

The radiologist's synopsis has a lot of new vocabulary in it. It's about as clear as mud what he was trying to say.

All I wanted to know was; What kind of treatment do I need to get rid of this back pain?