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Fellow Travelers

Posted by Frederick Wasti
Jun 25 2013

Yesterday was "just" another treatment day at Dana-Farber. Der Status quo. Stasis. (How about that - Greek, Latin, and German, all in two short sentences.) All of "my numbers" remain virtually unchanged. Unverändert. (Ya gotta love "The Google"...)

One interesting surprise for the day occurred on our way to D-F. We had just turned left onto Melnea Cass Boulevard from Southampton Street (or maybe it's actually Massachusetts Avenue at that point) and we were slowly passing one of the many shuttle buses that bring people from outlying parking garages to the many medical facilities in the "D-F neighborhood". The photograph in a large advertisement posted on the side of the bus slightly in front of us in the next lane caught my eye, and I said to Diane "Hey, that looks like Michele" (i.e., Michele Walsh, my nurse practitioner at D-F). And, sure enough, as we continued slowly passing the bus (and I was no longer able to look at the "moving billboard" anymore, since I was driving in traffic), Diane was able to see the photo better and to finally be able to read the words below the picture, to confirm that it was indeed "our" Michele.

We see Michele most of the times we are at D-F (basically every time we visit there except on those days when we periodically meet with David Fisher, my doctor at D-F, instead -- and we happen to be scheduled to meet with Dr. Fisher instead of with Michele the next time, on July 8th). The poster on the bus seemed to be prominently advertising the health field programs at Simmons College, and Michele Walsh (connected with Simmons, Harvard, and of course Dana-Farber), who had recently received an award for her research efforts, was the person featured on the bus poster.

When we did meet with Michele at D-F on Monday and mentioned her "moving picture" (I jokingly told her that we had seen her "riding the bus"), she had heard about her being seen all over town from so many people already that there was no surprise and only a little reaction in her response. (This, of course, was a surprise to me, since I am ~so~ used to people reacting to my attempts at humor - <grin>.) Michele said that she had heard that the ad was being seen in places as far away as Singapore and Kuwait, where Harvard has some international medical training programs. Later on in the day I realized that I should have kidded her by asking for her autograph, but I had missed my chance by then. Oh well...

Anyway, I wanted to write in today's blog entry about some "fellow travelers" (and I am not referring here to Michele as a "fellow traveler" just because she happened to have been "riding the bus" alongside us as we were heading to D-F yesterday morning, although my medical providers are indeed traveling along with me on my path to a healthier and longer life). Rather, I wish to write here about a couple of my fellow CLL-ers and about one specific caregiver and patient advocate important to me. OK? Alright then...

You, because you are reading this blog right now, are therefore one of the "unassembled multitudes" (Har!) who have spent time (although sometimes perhaps only seconds) viewing this blog (or at least part of it) - some periodically, some sporadically, some only occasionally, and some only accidentally (thanks to "The Google"). In any event, I do know of a small number of people who care about me who do check the blog at least occasionally (although I also know of a few other such people that choose not do so as well, and that's OK, too). However, I do not know the identities of everyone who might come across it and who might read it at least a bit, perhaps just out of curiosity, perhaps because they are searching on the Internet for CLL information for themselves or for people they are close to. (And, to anyone reading this right now, let me just say "Hello" you, and "Thank You" for your interest.)

A few weeks ago I received an email message from a man whose father had been diagnosed with CLL, and who was also unlucky enough to have the 17p deletion that I have, and who had also recently started the same clinical trial ( http://www.clinicaltrials.gov/ct2/show/NCT01465334 ) that I am in at D-F. He thanked me for maintaining a log of my experiences during the trial, which his father had recently started on. He provided me with his father's cell phone number, and suggested that I might be willing to meet with his father during one of the times we were both at D-F, and that his father might appreciate sharing thoughts and experiences with me.

Although we did have a couple of missed chances at getting together, as we were "ships passing by night" (or by day - <grin>) at D-F, we did eventually get together, just as he was receiving an Ofatumumab infusion and I had some free time between my own appointments. We discussed our "war stories" (so to speak), with him being the Part A "rookie" and with me being the Part C "battle-scarred veteran". It was interesting indeed to talk with him, and I do hope the time and words we shared might have been useful to him. It was satisfying to meet a "fellow traveler", and I hope we may meet again sometime, since we both still have many visits to D-F to come in our futures. (It was also gratifying to know that this blog may have helped, even if only a little bit, a father and his son, who did not know of me at all until coming across this blog while looking for online info on CLL.)

If you have been reading along in this blog for a while, you may know that I do read (and occasionally participate in) a couple of CLL mailing lists. (I also periodically check into a couple of the online CLL forums, too, but I read and participate in them less often.) I don't read every post in the mailing lists - I tend to skip over some of the posts on topics (such as shingles, neuropathy, secondary cancers, etc.) that - THANKFULLY - do not (yet, anyhow) directly affect me. However, I do read many of the other posts (i.e., the ones that - admittedly quite selfishly - seem most relevant to me), and once in a while I even jump in with a few (<cough>) "words of wisdom" (<cough-cough>), if the topic seems to be something that I have some experience with or questions about, or perhaps (surprisingly) even have some knowledge about (<choke>).

A recent example of such a foray on my part into one of the lists took place recently, when I replied to a man who, unlike the man I had recently met at D-F, had been battling CLL for some time, had so far survived both CLL and a number of treatments for it, but who seemingly was getting a bit desperate.

He said, in his post, that he was now at CLL stage 4 (the most serious stage), that he had already received all of the usual chemo treatments, that he had undergone a bone marrow transplant that had failed, that he had been rejected for any clinical trial, and that his oncologist had recommended using either Revlimid or Ofatumumab. He was additionally concerned that this platelet count was currently fairly low, and, from what he had read, he thought that either drug could cause his platelet count to drop further.  He did say that this was "going to be a big decision as this is last resort".  He then asked anyone who had been treated with either drug to reply with their experiences.  Finally, he added that "a big part of [him] would rather preserve what quality of life [he has] left rather than get sicker due to taking more drugs".

Now many people on the CLL lists (and on the CLL forums) employ a (usually somewhat CLL-biographical) "signature", automatically added to the end of their posts after their name. For example, my own posts usually end with "dx 2010 - 17p deleted - IgVH unmutated - currently in 17p CLL Dana-Farber clinical trial NCT01465334". The signature used by the author of the post I referred to just above reads, far less optimistically, as "dx 1993 - too many treatments to list". Well, as someone who has benefited from Ofatumumab, with manageable side effects, I felt compelled to offer a reply, as follows:

Hi, [name redacted].

I can't speak about Revlimid, but I can discuss my own experiences with Ofatumumab.

My experience with Ofatumumab (Arzerra) is that it typically gives me a "heavy head" - sort of like having a head cold or flu (but without any nasal congestion) - sort of like "almost having a headache". It's quite tolerable, and, by the next day, the "heavy head" sensation is gone. However, it is worth noting that I am given some Tylenol, Benadryl, and Methylprednisolone as pre-meds before any Ofa infusion. (I am also sleepy during part of the infusion, but I attribute that to the Benadryl and not to the Ofatumumab.)

It is difficult for me to say just how effective Ofa by itself has been for me, since it is part of a clinical trial that also used (earlier in the trial) high-dose Methylprednisolone with the Ofa, and (later in the trial) Campath (Alemtuzumab) with the Ofa, but I did achieve marrow MRD status (undetectable CLL cells at an MRD test sensitivity level of 1 CLL cell per 10,000 WBC) a few months ago. Currently I am getting Campath every other week and Ofa every eighth week, and my differential WBC counts remain stable (with usually only 1% or 2% lymphocytes).

My platelets were at 80 (thousands per microliter) at the start of the trial, but immediately went above 100, and have been "bouncing around" somewhere between 100 and 170 ever since (except for once back in October when it dropped to 83 just for one one test). So, I certainly did not experience a drop in platelets due to treatment.

However, I was treatment-naive before this trial (specifically designed for 17p del CLL-ers), unlike you, who have had "Too many treatments to list", as your signature says.

Ofatumumab molecules work by latching onto the CD20 molecules on the surface of lymphocytes. However, in your previous treatments (that you didn't list), you may already have had Rituxan (Rituximab), which also works by attaching to CD20 molecules. So, I am not at all sure how effective the Ofa would be if you have had Rituxan recently. However, since Ofa grabs the CD20 molecules closer to the cell membrane than Rituxan does, it ~might~ still kill some CLL lymphocytes, despite your already having had Rituxan.

I can't say how Ofa might work for you, of course, but it ~might~ be useful in knocking down your CLL cells, at least somewhat, and it ~might~ be as tolerable for you as it has been for me. However, please remember that, while my treatment has been very successful for me, and while Ofa must have contributed to at least part of that success, Ofa was never given to me as a monotherapy, and I was treatment-naive before starting to use it.

I do wish you strength, Sir.

Carry on then...

[my name and my "signature"]

In online and email usage, "YMMV" (as in "Your Mileage May Vary") is an informal, sightly silly initialism used to caution the reader that his/her own experiences might vary somewhat from the writer's own experiences. I chose not to use "YMMV" in my above reply (which was intended to be without any humor), but, when I sent the above post, hoping to provide some modest encouragement to this "fellow traveler" to consider trying Ofatumumab, I did want to avoid offering unreasonable expectations. I do hope I had succeeded.

I would now like to mention another "fellow traveler". Her name is Chaya Venkat.

Chaya is not a CLL patient, although she had been a CLL caregiver for a number of years, and has been an extraordinary patient advocate for those afflicted with CLL.

Chaya is responsible for three related web sites, "CLL Topics" ( http://clltopics.org/ ), "CLL Topics Updates" ( http://updates.clltopics.org/ ), and "Harvey's Journal" ( http://www.journal.clltopics.org/ ). She is not a medical person, but she is a scientist (chemistry), a science educator, and a science writer.

I first learned of Chaya's "CLL Topics" and "CLL Topics Updates" web sites shortly after I first learned that I had something called "Chronic Lymphocytic Leukemia", and, not long afterwards, that genetic testing showed that my leukemic lymphocytes tested for a chromosome 17p deletion (which, when I was first told this by my Jordan Hospital (Plymouth) hematologist/oncologist, Dr. Hannah Yamin, I had already absorbed enough info about CLL to know that "17p deletion" equated with "bad news") -- I had started using "The Google" to find out that "the good cancer" (as some general practitioners still refer to it) was far from good, and that was especially so if one was one of the approximately 7% of CLL-ers unfortunate enough to have a 17p deletion.

I had also learned from a small number of online sources that the so-called "gold standard" treatment of FCR (Fludarabine, Cytoxan, and Rituxan) would not work well for me, because Fludarabine and Cytoxan are relatively ineffective for 17p del CLL since they rely on the presence of the TP53 gene, normally located near the p end (the short end) of the 17th chromosome, and that particular gene is missing from 17p-deleted chromosomes. Furthermore, since Fludarabine and Cytoxan do their work by crippling the genetic machinery of all rapidly growing cells (whether cancerous or just simply rapidly growing) by causing catastrophic DNA mutations, I might incur the possible risk of developing such things as secondary cancers (certainly far more serious than the more commonly known loss of hair that most such chemo drugs commonly cause) without benefiting much from any of their cancer cell killing effects.

When I started my online CLL research, I found that, basically, I had three types of sources to use: First, there were the all too common, and all too generalized, health and medical web sites, that provided brief, non-specific, and often outdated information on CLL. Then there were the web sites belonging to the various cancer and leukemia organizations, which did provide quite a bit of useful, concrete, and factual background information on leukemias in general and on CLL specifically. And then there was Chaya's site, "CLL Topics" (I clicked back and forth between the "CLL Topics" and "CLL Topics Updates" sites so often that I more or less considered them to be one site), and there I found what I had most been looking for.

Chaya's site(s) offered more up-to-date specific information on the ins-and-outs of CLL and its treatment than any other. (Even some of her pages that might already have been two or three years old still were more current than the pages on most other sites at that time.) Furthermore, she was not "just" a medical person per se, but was a well-informed CLL caregiver, who had been fighting alongside her husband for several years as he fought back against the onslaught of CLL (and it is worth remembering that the outlook, even just a few years ago, for some CLL patients, i.e., for those who did not have one of the "good cancer" flavors of CLL, was much more bleak than it is nowadays), so she had insights into CLL that "regular" medical people might not have had. (And, besides maintaining and promoting the web sites I often visited, Chaya, as a highly respected layperson, has often been a speaker at CLL symposia, as well.)

Chaya's husband, Palasena, was diagnosed with CLL in 2001, and his disease progressed slowly but surely (as he received separately both Fludarabine and Revlimid along the way) to the point where it seemed his best option was that of a stem cell transplant, which he ending up having in late March of 2008. He did seem to do reasonably well with his transplant at first, and his CLL did seem to be under control, but, of course, he was greatly immunosuppressed at that point, and then, what started out as a cough turned into pneumonia, which quickly turned into Acute Respiratory Distress Syndrome, and he died in late June, 2008, less than two months after receiving the transplant that was supposed to save his life.

Palasena Chidambar Venkat was born two years ~AFTER~ I was born, and he died two years ~BEFORE~ I was even diagnosed. CLL is ~NOT~ "the good cancer". (There is ~NO~ "good cancer".)

I briefly mentioned "Harvey's Journal" ( http://www.journal.clltopics.org/ ) earlier. Actually, "Harvey" first made his online "appearance" as part of the "CLL Topics" web site, where his (supposedly hypothetical) experiences served as specific examples to illustrate some "CLL topics" (so to speak). However, and despite its name, "Harvey's Journal" is really a log of Chaya's husband's final CLL journey over what would ultimately be the last few months of his life. (I'm not sure that anyone who spent much time on the "CLL Topics" web sites would have ever been "fooled" into thinking it was about anyone but "PC", as Chaya called her husband -- at one point Chaya stated that "I am told there is an uncanny resemblance between Harvey and my husband PC but you understand I cannot possibly confirm or deny that".) I do think it is interesting that, through nearly all of the sequential pages on the "Harvey's Journal" web site, the subject in the journal entries was referred to simply as "Harvey" until just the last few entries (just as PC, a.k.a. "Harvey", was facing the most serious parts of his journey), when the name "PC" was used sometimes instead of "Harvey".

The two "CLL Topics" sites were started by both Chaya and PC, and Chaya was determined to continue on with their previously shared efforts, despite her devastating loss, fighting to educate CLL-ers about CLL and its treatment choices, and - more importantly - to encourage them to empower themselves with the knowledge needed for them to be their own best advocates for obtaining the best in CLL care, rather than merely relying on what the local general oncologist (who often knew less about leukemias than solid tumors, and who saw perhaps one CLL patient a year) might suggest.

[I do wish to emphasize here that the above comment is ~not~ relevant at all to ~my~ local hospital, Jordan Hospital of Plymouth, ~or~ to its Cancer Center, and certainly ~not~ to my CLL doctor at the Jordan, who is a hematologist/oncologist, and who does know much about the diagnosis and treatments for leukemias such as CLL.]

I owe much of my earlier knowledge of CLL to Chaya's sites, and, although I have since been able to learn quite a bit from published medical articles, and although I have since found a few other, usually newer, useful web sites, if I had to pick the one source that has provided me with the most useful information that I have benefited from, it would have to be the "CLL Topics" web sites.

A few months ago, Chaya announced that she was going to take a needed break (she referred to it as a sabbatical) from her previously tireless work on the "CLL Topics" web sites, and then, on this past Sunday, she announced that she would actually be retiring (although the sites would remain online to continue to help people). Although her retirement is ~entirely~ understandable (and well deserved), it is also true to say that Chaya Venkat will ~truly~ be ~greatly~ missed by the CLL community, where she has been a ~force~, and where her retirement cannot help but leave an empty space. (It is difficult for me to believe that there will be no further updates on the "CLL Topics Updates" site.)

I think of Chaya and PC as "fellow travelers".

Well, if you are interested enough to still be reading this, you might like to also read Chaya's final post on the "CLL Topics Updates" site, titled "Time to say good-bye", at http://updates.clltopics.org/4874-time-to-say-good-bye . There are many comments below her entry (just as there are comments below each of her other entries there), but I'm sorry to say that you won't be able to read them unless you were to create a login name and password to do so. I will, however, reproduce my own comments here, just as I left them below Chaya's last entry:

Hello, Chaya.

I want to thank you for all you have done for all of us CLL-ers, and for me. Your thoughtful and forceful words on the CLL Topics web sites were weapons on my behalf ever since I started to learn how to navigate my way across the CLL minefield. I am a stronger advocate for patient knowledge because of your advocacy for all of us.

May you find joy and satisfaction in the rest of your endeavors, and peace in all your quiet times. And trust yourself to love Buddy with all your heart...


(You will have to read Chaya's last post if you want to understand the significance of my reference to "Buddy".)

Carry on then...

Categories: Leukemia