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The Numbers

Posted by Frederick Wasti
Jan 24 2013

Yesterday we were at Dana-Farber once again, and it was a long day, since I had not only an Alemtuzumab (Campath) injection, but also an Ofatumumab (Arzerra) infusion (following the requisite premedications, of course, including an infusion of Methylprednisolone).

Actually, the day was longer than it really had to be, though, since there seemed to be some confusion as to which day of which Part C cycle in my clinical trial I should have been on as a result of missing one Alemtuzumab injection while I was in Brigham and Women's Hospital with pneumonia. We had previously been told that I would merely continue where I left off (which would have pushed everything in Part C two weeks into the future), but it had been decided very recently (and we were unaware of this until we arrived at D-F yesterday morning) that the one missing Alemtuzumab injection would instead be skipped, and that I would go back to following the original Part C schedule.

The result of the above was that, rather than having the last Alemtuzumab injection in Cycle 2 of Part C, I instead would receive both Ofatumumab and Alemtuzumab, since yesterday then became the first day of Cycle 3. There was extra, wasted time involved while everyone checked with everyone else, and it was all a bit frustrating for Diane and me, since the short day (one injection) had been replaced with a longer day (one injection and one lengthy infusion), and additional time was spent while we waited for everyone to get their proverbial ducks in a row. However, the actual treatments yesterday (once it had been finally decided what they were going to be) did proceed quite routinely, so that was good news anyway.

My blood was tested (of course), and I was pleased with the overall results. So, let's take a look at the latest numbers.

First, here is how my total white cell count has looked throughout the trial, up through yesterday:

Remembering that anything between about 5,000 and 10,000 leukocytes per microliter is pretty normal, it can be seen that I reached the normal range early last summer and have remained there ever since. This is good news by itself, of course, but it only shows the total number of white cells, and not the proportions of each type. So, let's take a look at "the usual suspects", i.e., the lymphocytes and the neutrophils.

Here's the graph that shows how the percentages of lymphocytes and neutrophils have varied during the trial:

It can be seen that the percentage of neutrophils still remains at over 90% of my leukocytes, while lymphocytes are still very, very low. Nonetheless, it can be seen that the very large difference between the two percentages has decreased slightly since Part C (with its less intensive "maintenance" protocol) began in December. I am not too concerned here about the neutrophil percentage - it is the lymphocyte percentage that has attracted my attention, since the lymphocytes (which Parts A and B greatly reduced in number) have started slowly growing back.

Now, I do want to emphasize the good news, though - while there has been an increase in the number of lymphocytes, it is good to have ~some~ lymphocytes, since they are (when they are non-leukemic and function correctly) an important part of a healthy immune system (which is something I certainly do not have right now, as evidenced by my recent pneumonia). I did ask Dr. Fisher what he thought about the increase in lymphocytes, and he first reminded me that I could certainly use a few more lymphocytes, and then he suggested that the new cells (hopefully) might all (or at least mostly) be normal (non-leukemic) lymphocytes. (In a few weeks I will be having another CT scan, to see if my spleen and lymph nodes have remained small or have started filling up with lymphocytes, and a bone marrow biopsy, to get an idea whether lymphocyte production in my marrow seems abnormal or not.)

Anyway, looking at the graph of the absolute number of lymphocytes,...

...it certainly doesn't seem as if the lymphocytes have grown at all in number. However, the exaggerated vertical axis on the graph (because there were ~so~ many lymphocytes in my blood at the start of treatment) helps to hide the fact that they have indeed increased a little bit.

Similarly, looking at the graph of the absolute number of neutrophils,...

...it can be seen that they may have decreased just a bit as of late, but that I still have plenty of them, since the normal range is from 2,000 to 6,400 per microliter.

Finally, there is one additional factor to consider when judging the percentages of neutrophils and lymphocytes: Before the trial started, and for most of Part A, I did have a small but significant number of monocytes (which are supposed to normally make up 5 to 12% of the total white cells). Then, during Part B, the monocytes were decimated. However, During Part C, the monocytes have bounced back. This can be seen in a graph of the percentage of monocytes during the trial,...

...as well as in a graph of the absolute number of monocytes (normally 0.2 to 0.9 in thousands per microliter),...

The obvious drop in monocytes during Part B and their modest recovery in Part C is easily explained: Alemtuzumab attaches itself to any cell with CD-52 molecules on its surface, which eventually results in cell death. In part B, I was given quite a bit of Alemtuzumab (three times a week for five months), in order to attack my leukemic B-lymphocytes, which do have CD-52 antigens on their surface. However, normal B-lymphocytes, as well as T-lymphocytes and monocytes, also have CD-52 on their surface, so they are also killed as "collateral damage". So, in Part C, where I am now given Alemtuzumab much less frequently (once every other week), as compared to Part B, it is gratifying to see the monocytes making a comeback. (<smile>)

And so, the recent increases, both in the absolute number of monocytes and in the percentage of monocytes, also help explain why the percentage of neutrophils seems to have dropped a bit lately (i.e, the drop in the percentage of neutrophils is not just due to the slight drop in the absolute number of neutrophils and to the slight increase in the absolute number of lymphocytes).

So, all in all, and despite some of the frustrations from yesterday's confusion, the bottom line from yesterday's blood tests do show some pretty darn good numbers. (<smile>)

Categories: Leukemia

Campath (#2)

Posted by Frederick Wasti
Jan 18 2013

I have already mentioned in a previous post, "Campath (#1)" from 12/13/2012, that Campath (Alemtuzumab) was first synthesized in 1979 by Herman Waldemann at Cambridge University in England. However, since then Campath has followed a rather circuitous path for its development and marketing, and it continues to do so, as I will try to demonstrate here in this post.

Nowadays, almost all drug development occurs in the laboratories of large pharmaceutical companies (or in the labs of smaller pharma companies that end up being acquired and absorbed into larger companies). Such was not the case circa 1980, especially in the UK, where many medical discoveries occurred in academic research labs.

The original funding for Campath development came from the UK's Medical Research Council (MRC). The MRC assigned the rights to Campath to the National Research and Development Council (NRDC), which originally had the purpose of coordinating research between academic labs and industry, but which morphed into an industry-leaning organization, renaming itself as the British Technology Group (BTG) in the process, which did not allow Campath (and similar monoclonal antibodies) to be patented by the original developers. Instead, BTG (which had now morphed further into an international pharmaceuticals company in its own right) assigned the rights to Campath to Wellcome Biotech in 1985.

Wellcome later, in 1995, merged with Glaxo Pharmaceuticals to form Glaxo-Wellcome. However, Glaxo-Wellcome, right in the middle of a series of clinical trials, made the business decision to abandon Campath development (apparently having decided that Campath would not ultimately generate enough profit to make it worthwhile). So, in 1997, BTG re-assigned the rights to Campath to a smaller company, LeukoSite Inc., which ended up merging into Millennium Pharmaceuticals in 1999, which continued the necessary clinical trials, and, in 2000, Millennium was able to file a "Biologics Licensing Application" with the US Food and Drug Administration for the use of Campath as an anti-CLL drug.

On May 8th, 2001, Millennium Pharmaceuticals proudly announced in a press release that "The U.S. Food and Drug Administration (FDA) today cleared Campath (Alemtuzumab) humanized monoclonal antibody for marketing as a treatment for patients with B-cell chronic lymphocytic leukemia (B-CLL) who have been treated with alkylating agents and have failed fludarabine therapy".

During the application process, Millennium partnered with ILEX Oncology to complete the development and to obtain final USDA approval, and it ended up that Millennium transferred the development and marketing of Campath to ILEX, and the BTG license to Campath was then also transferred to ILEX. (And your head is probably spinning as much as mine is over all of these business and government machinations, but they're not over yet...)

In 2004, ILEX was acquired by Genzyme Inc., and the marketing of Campath was handed off to Berlex Laboratories in the US, and to Schering AG in Europe (where Campath is branded as MabCampath - the "Mab", of course, referring to "monoclonal antibody"). (Interestingly, before World War II, Berlex and Schering were actually part of the same company, but the US government required that it split into separate US and German companies in 1942.) Meanwhile, in 2006, Berlex became Bayer Pharmaceuticals, which then acquired Schering (which had become an international competitor of Berlex), whereupon Bayer Pharmaceuticals was renamed as Bayer HealthCare Pharmaceuticals. (<Whew!>)

In 2009, Genzyme Corporation entered into an agreement with Bayer to acquire the worldwide rights to Campath, giving Genzyme the primary responsibility for the development and commercialization of Campath as a treatment for CLL and as a treatment for Multiple Sclerosis (MS). Under the agreement, Bayer would continue to fund a portion of Campath's development for MS and would retain an option to co-promote the product for MS treatment upon approval, and would retain the right to develop and commercialize Campath for its use in solid organ transplants. Note that Genzyme thus had a stake in the development and marketing of Campath for both CLL and for MS (even though its approval for use in MS had not yet been given, either in Europe or in the US).

In 2011, Sanofi S.A. (a French multinational pharmaceutical company headquartered in Paris, and the world's fourth-largest in prescription sales) acquired Genzyme, including all of the rights to Campath. Considerable negotiating went on between Sanofi and Genzyme over the ultimate financial worth of Campath - while Sanofi downplayed the extent of its future value as an anti-CLL drug, Genzyme countered by emphasizing its likely much greater financial value as a future drug to be used against MS. As a result, the $20B agreement in which Sanofi acquired Genzyme included provisions for future payments to Genzyme stockholders if Campath did eventually do well as an MS drug. Furthermore, Genzyme was to continue as a division of Sanofi.

Here is where the significance of Campath as a drug that is useful for treating CLL (especially for CLL patients resistant to "regular" CLL drugs, either because they have had repeated treatments already, or because they are 17p-deleted), but which is also useful for treating MS (especially for MS patients in the "Relapsing/Remitting" phase, which is the stage of MS which most MS patients are in when they are first diagnosed), arises. The big problem (from a CLL patient's perspective) is that there is ~much~ more money to be made in the considerably larger MS market, and (as we shall shortly see) this is especially true if Campath is no longer made available to CLL doctors and patients.

I first became aware of the danger to CLL patients needing Campath when, in August, I read in "Dr. Sharman's CLL and Lymphoma Blog" (Dr. Jeff Sharman is a hematologist/oncologist from Oregon) that he "was quite surprised today [8/22/2013] to hear that Campath is being withdrawn from the oncology marketplace". Dr. Sharman pointed out the value of Campath, even though it is never used by the vast majority of CLL patients: "Campath is a 'bit player' in the management of CLL/NHL, but for docs comfortable using it - it can be quite handy. It is one of the few drugs that clearly works in the group of patients with 17p deletion and can be effective when other drugs have failed." Furthermore, "Although it was never much more than 5% of CLL patients [that were] ever treated with the drug - for that 5% it was quite good."

I then also read in "CLL Topics" (a blog by Chaya Venkat),

"Campath is no longer available as a commercial drug to treat CLL patients. What caused this massive change of heart on the part of the drug company that owns this monoclonal? Simple. Money. Lots of it. You see, the very thing that made Campath so immune suppressive in CLL patients – its well documented ability to kill off T-cells and keep T-cell counts low for a long time thereafter – proved to be useful in treating multiple sclerosis. MS is an autoimmune disease, caused by T-cells gone berserk and attacking the myelin sheath of nerves. For these patients, reduced T-cell counts is a blessing, since it gets them much desired remission."

The above results from a two-part problem. First, there is much more money to be made by the selling of Alemtuzumab (to be branded as Lemtrada) to the larger MS market than by the selling of the drug (branded as Campath) to the smaller CLL market. Second (and this may sound strange), it would actually hurt profits by continuing to sell Alemtuzumab as both Campath and as Lemtrada, as compared to selling it as Lemtrada alone. Let me try to explain:

Sanofi just recorded an annual sales figure of $76M from Campath. However, if it receives approval to start selling Lemtrada in 2013, it expects to be able to ramp up to an annual sales volume of between $330M and $400M by 2016. Now that's a significant jump in sales.

But, it's more complicated than just sales alone:

Campath is provided as a 30mg dose, and a typical CLL patient might require three doses per week over a period of several months, at an annual cost of about $60,000. However, an MS patient requires only 12mg per dose, and needs just five doses at the start of the first year of treatment and then only three doses on the anniversary of those first five doses. If Campath is purchased by doctors in 30mg doses, and is then re-formulated into 12mg doses, those doctors can provide it to MS patients for a total cost of about $7,000, which is considerably less expensive than the typical $30,000 cost of other MS drugs. While it is apparently not too common for MS doctors to do this in the US, it is quite commonly done in Europe, even though Alemtuzumab has still not been approved for use in treating MS anywhere in the world.

Obviously, this presents a financial dilemma for Sanofi. It really does not wish to continue tolerating the "off-label" use of Campath for MS treatment, and it is also expected that it would likely choose to raise the ultimate cost of Lemtrada closer to the current cost of about $30,000 for its MS competitors, certainly pricing it considerably above the $7,000 "off-label" cost of Campath for use with MS. What to do? Why, discontinue the sale of Campath. And that's exactly what happened as of September 4th, 2012 - no more Campath to be sold for CLL treatment.

Obviously, both the CLL community and the MS community had concerns. Three of the UK doctors involved in using Campath for treating MS stated in a letter to the editor of the newspaper The Independent,

"The decision has 'serious implications for vulnerable UK patients with MS', because patients who have already started treatment with Campath will 'not be able to get their vital second course'. Meanwhile, newly diagnosed patients may 'miss their window of therapeutic opportunity' to start treatment, putting them at risk of 'progressive, severe disability'. The maneuver established an 'inappropriate precedent', and 'shows little regard for patients whose opportunity to alter the course of their disease is time-limited, and may represent an over-enthusiastic attempt by the parent company to profit from the current situation'."

One of these doctors was further quoted as saying,

"Many of us think it is the best drug for patients with aggressive MS in the early stages of the disease. It's the greedy behavior of the drug company that upsets me. They are just trying to rebrand it and put the price up. It is morally corrupt."

The head of biomedical research at the Multiple Sclerosis Society in the UK said of Alemtuzumab (which, remember, has not yet received official approval for use with MS, either in Europe or in the US):

"The drug 'shows real promise as a potentially new medicine for many people with relapsing-remitting MS. There is no good reason why people with MS who have been allowed to benefit from the treatment should now be denied it. Genzyme needs to come up with a scheme, quickly, that makes their product available to all those people currently being treated and, if it's licensed, price the drug reasonably so it is deemed cost effective' for the UK's National Health Service."

At first, the CLL community was also concerned. Chaya Venkat's description of the CLL aspect was none too subtle:

"Why not market Campath both for CLL and MS? Aha. That is the ~billion~ dollar question. You see, MS patients need very small amounts of Campath. If it is marketed at the present price Campath commands to treat CLL, the company would be selling the drug to MS patients at a significantly cheaper price than other MS therapies. Oy vey! If the drug was available in the marketplace at the present price it gets for CLL, doctors and patients would be buying it at that price, even if they were actually going to use it for treating MS. What to do? Stop selling Campath to CLL patients! Genius! Now the company can jack up the price several times over, sell it only to the MS patient community. I wonder how much they pay the guy who came up with this idea. And how he sleeps at night."

However, Dr. Sharman's blog entry did cautiously offer some potentially good news: "It sounds like there may be patient access programs for patients with CLL - hopefully those materialize. Rumor has it that it may even be given away for free to patients with CLL - obviously that would be a good thing - but I will believe it when I see it. Furthermore, additional barriers may just make a hard to use drug even harder to get."

Chaya Venkat also did offer some guarded optimism (for CLL patients, such as myself, who use Campath):

"In an attempt to avoid scathing public opinion, the company says they will give away Campath free of charge to CLL patients in this country. However, doctors cannot prescribe it in the usual manner, hospital pharmacies cannot supply it, physicians have to call a special phone number, and the physician has to go through a lot of hoops and hassles to justify why a given patient needs Campath. [...] How long will the company continue the compassionate use program? No one knows. Is this only for USA patients? How about CLL patients elsewhere? I do not know."

As it turns out, Genzyme USA (a division of Sanofi) has this current statement online for its "US Campath Distribution Program": "The Campath Distribution Program was developed to ensure continued access to Campath (Alemtuzumab) for appropriate patients. Effective September 4, 2012 Campath will no longer be available commercially, but will be provided through the Campath Distribution Program free of charge. In order to receive Campath, the healthcare provider is required to document and comply with certain requirements."

In an August 9th letter to health care providers, Genzyme made it clear that it would stop selling Campath, not "for any reasons related to product safety, efficacy, or supply, but as part of the company's plan for bringing Alemtuzumab forward as a treatment for a new indication". The company added that it "will continue manufacturing sufficient quantities of Alemtuzumab to supply this patient access program".

And, the good news, for CLL patients that benefit from Campath, is that the "Campath Distribution Program" does seem to be running smoothly. According to Hildy Dillon, the Senior Vice President for Patient Services at the Leukemia and Lymphoma Society,

"There is an extensive patient-distribution system which they have shared with us. They've actually been quite supportive to us and our constituents by telling us what the distribution is and how they have communicated their plans to health care providers who treat our patients - hematology oncologists both in the community and in the major cancer centers. [These doctors] are now aware of how they can access the drug since they no longer will be purchasing it, but they can contact the company directly to get whatever supply they need. Genzyme was in touch with advocacy groups like ours to make sure we were aware of the change and how physicians will be accessing the drug. They've done a lot in their due diligence to inform both the physician community and the patients. It's our understanding that there won't be any shortage of supply and that the patients who need Campath will be able to get it."

Furthermore, Ms. Dillon said that the Leukemia and Lymphoma Society had been assured that Campath would be available for ~all~ patients who need it, including those who may be prescribed it for the first time, even after it is no longer available commercially.

This is hardly the first time that a drug has been re-branded for use with a different purpose. As one example, the drug Sildenafil was originally tested as a treatment for hypertension and angina, but men being treated with it had "side effects" that caused Pfizer to re-purpose the drug - branded as ~Viagra~ - for something else altogether (<grin>).

However, marketing a drug for two different markets at two different prices can have disastrous effects, at least from a public relations perspective. One good example of this is provided by Genentech, with its drugs Lucentis (Ranibizumab) and Avastin (Becavizumab) (both derived from the same parent molecule). Both drugs had showed potential in clinical trials for the treatment of age-related macular degeneration of the eye (AMD), but Genentech never applied for approval for Avastin for use with AMD because it would undercut the Lucentis market for AMD, since Lucentis sells for about $2,000 per injection, while Avastin, approved for and marketed as an anti-cancer drug, costs only $50 per injection. As one article stated, "Genentech has gone to lengths to prevent AMD patients - who go blind if not treated - from getting their hands on Avastin, and everyone agrees that Genentech's position is an example of the corporate rapaciousness that brings the drug industry into bad repute". However, in another article, a spokesman for Sanofi/Genzyme denied the similarity between the two business cases, saying, "We believe the situation that we are managing with Alemtuzumab is unique".

Well, the bottom line for me, however, despite all of the above "sturm und drang", is that Dana-Farber is still able to easily obtain Campath, so that I am still able to receive it (at least as long as I can tolerate it). Still, it is difficult not to be cynical about the situation. As Chaya Venkat has said, "Pity of it is that, while Campath was hardly the wonder drug its supporters claimed it was a few years ago, it was nevertheless an important drug for CLL patients. It was one of few options for patients with the dreaded 17p deletion. If you were not cynical about drug company agendas before, this story might be enough to push you over the edge."

Categories: Leukemia


Posted by Frederick Wasti
Jan 08 2013

[Well, "new-monia" is new to ~me~ - <grin>.]

As I reported in my previous blog post ("The Eight Days of Christmas", from 1/5), I recently spent a week-plus at Brigham and Women's Hospital (BWH) due to pneumonia in my left lung. The good news is that I seem to be doing OK now, and I've been home for over a week.

Yesterday at Dana-Farber (D-F), I resumed my CLL clinical trial treatment, receiving a "regular" injection of Alemtuzumab (Campath). However, I also found out more about the myriad of tests performed on me and on my bodily fluids during my stay at BWH. Interestingly, almost all of them (fortunately) came back as negative - it is nearly always better to have "simple" bacterial pneumonia than to have either viral or fungal pneumonia (which several of the tests were looking for), and it does appear as if I had "only" bacterial pneumonia(s) (whether I had a couple of different bacterial pneumonias or "just" one is not clear).

I never developed much in the way of overt pneumonia symptoms. Coughing was minimal, and breathing never became difficult (although deep breathing did become painful toward the front of my upper left lung by the time I was admitted to BWH). Nonetheless, there were three areas in my left lung that showed as pneumonia-involved, resulting from the alveoli being filled with fluid and blood cells instead of air.

It turns out that many bacterial pneumonias are treated successfully without ever finding the exact organism(s) involved, and that would seem to be true in my case. Interestingly, one test did indicate the possibility of Legionnaires Disease, caused by one of the several species of bacteria belonging to the genus Legionella ("The Fred's Foreign Legionella" - <grin>) - both the type of pneumonia and the type of bacteria involved are named for the first known mass infection that occurred among many unfortunate members of the American Legion that had attended a convention at one hotel in Philadelphia in 1976.

[Headlines from 1976 about the newly discovered Legionnaires Disease]

There have been a number of outbreaks of Legionnaires Disease worldwide since 1976, but the number of people dying from these incidents has generally decreased over time, due to both increased awareness of this type of pneumonia and the availability of better antibiotics for treating it (and other pneumonias, too). In my case, whether my pneumonia(s) had any Legionella involvement or not, the principal antibiotics I ended up taking happen to be very effective in treating Legionella (and most other bacterial pneumonia organisms, too), so I "was covered" whether I had Legionnnaires Disease or not.

I do have to say that my treatment at BWH seemed to be top-notch. Each day I was visited by a number of doctors (from both BWH and D-F), and I started to get the feeling that there had to be a pool being run among the staff where every doc had a chance to bet on which particular pneumonia(s) I had (I don't know who won the pool, because I don't think there could have been be a clear winner in the end). It was sort of like an antiques auction, where every potential bidder wanted a chance to see the "merchandise" before bidding...

I did have one serious test worth mentioning. On the day after Christmas I had a "CT-guided lung biopsy". In this interesting procedure, I got to slide in and out of a CT scan machine several times, while the biopsy doc and a pathologist examined both my CT scans and the biopsies obtained by poking a needle through my chest wall and into the upper part of my left lung (using the CT scan imagery to "aim") - I ended up with four biopsies being taken before the pathologist was satisfied with the results. And, I did ~not~ develop either a pneumothorax (i.e., loose outside air inside the lung cavity) or a collapsed lung, which are the two principal potential bad outcomes from the procedure (<Whew!>).

The room I was in at BWH was also interesting. It basically was "just" a private room, but the ventilation and entrance/egress doors were unusual. Filtered air under pressure was constantly pumped into the room, so that outside air from the nursing area outside the room could not enter the room, bringing germs with it. There was a double door to/from the room - there was an outer door to the nursing area and an inner door to my room, with a short "air lock" corridor in-between, where people entering and leaving the room could wash their hands and put on or take off breathing masks as necessary. Not surprisingly, the outside window was sealed - it could not be opened to the outside air.

Therefore, the room is designed to be as germ-free as possible, and is especially useful for patients who are very immunosuppressed. There was a sign on the wall stating that "This bed is licensed by DFCI", meaning that this is one of several rooms within BWH that are for the use of Dana-Farber Cancer Institute patients, particularly for those undergoing a stem cell transplant (which is still something I am trying to avoid). Quite high-tech, all in all.

BWH and D-F are physically connected to each other, and they are also members of the Partners Healthcare group of hospitals (which also includes Massachusetts General Hospital, for example). All of these hospitals are also teaching affiliates of Harvard Medical School, as well - as an example, my principal D-F hematologist-oncologist, David C. Fisher, is also an Assistant Professor of Medicine at Harvard Medical School. There is a significant amount of cooperation between the member hospitals, certainly so in the case of D-F and BWH - since D-F functions as an out-patient treatment hospital only, any D-F patient requiring an overnight hospital stay can do so at BWH. In my case, although I did have to spend Christmas at BWH, all of my doctors (both BWH and D-F) had easy access to all of my records at D-F (so that, for example, the BWH docs could see, by looking at my last CT scan from November at D-F, that my pneumonia was indeed a "new-monia", in that there had been no signs of pneumonia in either lung a month and a half previous).

Well, I am hoping that this will be my last mention of any pneumonia in this blog. The good news is that I did spend almost eight days at BWH being diagnosed and apparently successfully treated for pneumonia. The less comforting news is that no one could tell me how I picked up my pneumonia, or, other than in general terms, how I can prevent contracting pneumonia once again. It was somewhat reassuring when Michele Walsh, my D-F nurse practitioner, yesterday told me that I have actually been pretty lucky so far - patients there on Alemtuzumab for as long as I have been on it usually had found themselves hospitalized with one infection or another long before I did. (I don't know if this is literally 100% true or not, but it did make me feel a little less discouraged - <grin>.)

So we press onward...

Categories: Leukemia

The Eight Days of Christmas

Posted by Frederick Wasti
Jan 05 2013

[Yes, I know that the customary expression is "The Twelve Days of Christmas", which is the period beginning on Christmas Day, December 25th, and ending on Twelfth Night, January 5th, but, as everyone knows, "hospital days" are at least 50% longer than regular days, so that's my title and I'm stickin' with it - <grin>.]

I did spend a while in Brigham and Women's Hospital (BWH) over Christmas, starting on 12/23. That's both the good news and the bad news - it was not an ideal time to be in the hospital (is there ever really an ideal time to be in the hospital?), but, when I left there on 12/30, I was well on the way to recovery, so I guess it was a week-plus well spent (?) after all.

On Sunday morning, 12/23, after talking over the phone to Dr. David Fisher, my D-F hematologist-oncologist, Diane and I headed to the Emergency Room at BWH. Although we could have gone to, say, Jordan Hospital in Plymouth, the connection between D-F and BWH (physically connected to each other but also associated with each other) made it seem logical to go to Boston for checking into my condition. (As it turned out, it was a wise move.)

For a couple of days before heading to BWH I had a feeling something was wrong, and this became more obvious by Saturday evening, when it not only hurt to breathe deeply - a sharp pain in my upper left chest rib cage - but it also almost seemed as if my chest muscles were affected, as if I had perhaps strained a muscle - and my upper left chest even became sensitive to the touch. I had also developed a bit of a fever.

At the Emergency Department I was examined and blood samples (of course) were drawn, and I was sent out briefly to Radiology for a chest X-ray. The results all seemed to point to pneumonia in my left lung. As the ER doctor explained, if I were a "normal" pneumonia patient, I would probably have been sent home with prescriptions for antibiotics. However, as an immunocomromised CLL patient, it would be better to admit me to BWH, and a room was prepared for me to stay for "a while".

[An interesting poster, from the Federal Art Project of the Works Project Administration (WPA), from 1936 or 1937]

The odd thing to me was that I didn't feel as if I had "pneumonia symptoms". I did have a small fever, and I did have a bit of a cough (but it was a "dry cough", and not the "productive cough" that I assumed was typical of pneumonia). I did have some pain, but it felt as if it was centered in the rib muscles of the upper left rib cage, and not deeper in the chest. I did ~not~ already have a cold, as is often the case (and as suggested in the poster above), but I am taking antiviral (as well as antibacterial and antifungal) prophylactic medications daily, and I have not had any cold at all since starting treatment last March.

Pneumonia. Well, that's something I've never had before. "Well, there's always a first time." (Well, thankfully there's not ~always~ a first time, as there are ~many~ things that we would all just as soon avoid having for the first time, right? - <grin>)

"Pneumonia is an inflammatory infection in the lung, affecting primarily the microscopic air sacs known as alveoli. The infection can be only in one lung, or it can be in both. There are several causes of pneumonia but the most common are bacteria, viruses, and fungi. Left untreated, pneumonia can be deadly. In the days before antibiotics, it’s estimated that about one-third of those who developed bacterial pneumonia died."

But, that was in the "good" (bad) old days - nowadays, ~prompt~ treatment with the ~right~ antibiotic(s) generally results in a cure (although not always - Jim Henson, creator of the Muppets, died of pneumonia in 1990 at the age of 54 years). People still die of pneumonia, but, with proper medical treatment (which, unfortunately, is not the rule in many parts of the world, or, in fact, for ~many~ people here in the US), deaths due to pneumonia are not common.

In order to help determine the extent of pneumonia and also perhaps which type(s) of pneumonia I had, a CT scan was taken of my chest. (A CT scan is like a super-duper 3-D X-ray, providing more info than a regular X-ray can show.) It seems as if I had three areas of infection in my left lung. Two of these, lower down in the lung, appeared to be "just regular, garden-variety, run-of-the-mill bacterial pneumonia". However, the third of these, the one higher up in the left lung (at about where I had been feeling pain) seemed to be denser and was termed "atypical" by my BWH and D-F doctors.

I was subjected to a number of additional blood and other body fluid tests, as well as nasal swabs (of two types, one of which involves a Q-tip being inserted and twirled around in the outer nasal passages, which merely tickles, and the other of which involves a Q-tip being rammed way back in the nasal passages, and which hurts a whole lot more than it tickles - <groan>), but nothing initially showed (yet) what was specifically going on (but it does take time to culture the various fluid samples - there is no such thing as an immediate culture test result), so I started receiving broad-spectrum antibiotics by infusion and by mouth, usually two different ones at a time. I believe that these were all various antibacterial antibiotics (following the suspicion - and the hope - that my pneumonia lesions were all bacterial), but I do admit to maybe losing track of the names of some of them (<g>) - a few at least were Azithromycin (Zithromax), Ceftriaxone (Rocephin), and Vancomycin (Vancocin).

It does seem as if the main indicator for judging the effectiveness of the treatments was my body temperature (and, although I was given Acetaminophen at first to bring down my fever, this was soon stopped, since doing so was masking measurement of my true body temperature). Of course, other clinical symptoms and parameters (such as the level of chest pain) were also considered as well.

Eventually, my treatment regime settled on two antibiotics, Cefepime (Maxipime), which was given by infusion, and Levofloxacin (Levaquin), which was administered orally. I finished the Cefepime regimen while I was still at BWH, but I was given a prescription for the oral Levofloxacin to continue taking at home, and I was discharged on Sunday afternoon, 12/30.

Please stay tuned for some more details of my BWH "Christmas vacation" in my next post...

Categories: Leukemia