We are committed to finding a cure for WM.

Rod Anderson

A member of WMF Canada

Rod Anderson (patient)

This is simply an example of the sort of forms (in this case for a patient) used for displaying shared information in the discontinued experiment in voluntary information sharing . Thus the “explanation” displayed immediately below was based on this experiment.

Explanation: all the information listed below is voluntary. There may be some information a member would prefer to keep confidential. Where information is not provided, it will either say “none” (or sometimes “not applicable”) or it will say “not answered”. For example, where “symptoms at diagnosis” says “none”, the member has answered and there were no symptoms; where it says “not answered”, there may or may not have been symptoms but the member has declined to answer. Sometimes a member may choose to disclose the information but exclude contact information and use a “pseudonym” in the interests of confidentiality.

info title info supplied by member
1.   personal info
1a.  name or “pseudonym” Rod Anderson
1b.  date information below last updated Nov 3, 2007
1c.  sex M
1d.  address 1940 Hill 60 Rd., R.R.5, Cobourg, ON, K9A 4J8
1e.  phone (905) 372-2410
1f.  email address rod@rodmer.com
1g.  age 72
2.   status at diagnosis (blood numbers in Summary Table #6 below)
2a.  mo/yr of diagnosis Dec 2001
2b.  what triggered the diagnosis? diagnosis came about simply from my GP being slightly suspicious of falling HGB and high sed rate and consequently sending me to hematologist; turns out my GP’s father-in-law died of WM; small world!
2c.  mo/yr of first bone marrow biopsy Dec 2001
2d.  how was it? no problem; Dr. Matthews was an expert; only 2 seconds of pain as marrow being sucked into needle; no pain afterwards (but I’ve certainly heard of worse experiences)
2e.  percentage bone marrow involvement 80%
2f.  other BMB info I neglected to get these details
2g.  symptoms at diagnosis no symptoms (other than a few enlarged lymph glands and slightly enlarged spleen — not noticeable by me)
2h.  any other comments you want to make about status at diagnosis was feeling fine; diagnosis because of alert GP (see above)
3.   status now (blood numbers in Summary Table #6 below)
3a.  mo/yr of latest bone marrow biopsy Jun 2003 (haven’t had one since then)
3b.  how was it? equally painless as the first two — Dr. Christine Chen is also an expert at this
3c.  any new info from latest BMB “packed cells” — probably close to the 90% bone marrow involvement shown in Apr BMB — also iron stores very low
3d.  past symptoms (after diagnosis): slightly larger lymph glands and spleen (again not noticeable by me), had some very slight night sweats sometimes (not for a long time now), no significant fatigue until treatment started (see below), when HGB was in 70s heart used to pound a bit if climbed 3 flights of stairs — when HGB was down to 68, discovered minor hemorrhaging in both eyes (fortunately not affecting vision) apparently due to low HGB — the normal WM-vision problems are related to high IgM and high serum viscosity (which is not my case) but apparently very low HGB can cause oxygen-starvation which, for some reason, can lead to eye hemorrhaging — subsequently, the HGB went up (during the Velcade treatment) and the hemorrhaging was completely resolved (went away)
3d.  symptoms today No symptoms today (except for an extremely minor numbness in my toes — i.e, a slight, residual PN either from the WM or the treatment — but almost negligible. The main symptoms I used to have were related to lowered hemoglobin. But now that it’s back up to 151 I’m feeling fine.
3e.  any other comments you want to make about status now have now had 2 treatments: (1) Velcade which gave me a holiday of only 18 mos from Mar 1/04 to Sep 20/05 (2) CVP-R which I hope will give me a much longer holiday (from Apr 3/06 = so far 1 yr 6 mos and counting) before any further treatment is needed.
4.   treatment history
4a.  date started first treatment (and treatment type) May/03 (Velcade)
4aa.  date ended first treatment Mar/04
4b.  what triggered the start of first treatment? For 1-1/3 years I had been “watch and wait” but with the hemoglobin sinking initially to 73 (and later to 68) (and my Beta 2 Microglobulin at 5.5) my hematologist said it was time to start treatment (even though I had been feeling fine) — I had asked for a 2nd opinion from Drs. Chen or Stewart at PMH and ended up with Dr. Chen — and ultimately decided to enrol in the PS-341 (“Velcade”) trial
4c.  details of first treatment enrolled in the Phase II Clinical Trials of PS-341 (Velcade) at Princess Margaret Hospital, Toronto (same as Jeff Atlin) — completed 14 cycles (of 3 weeks each) ending Mar 1/04 — stopped because after initial improvement the numbers were now moving sideways and there were slight side effects (a little PN) — part way through the Jun/03 BMB showed low iron stores so I took an iron supplement (ferrous fumarate) for 6 mos — subsequent blood tests indicated satisfactory iron level (though later took another 6 mos of ferrous fumarate in 2005) — during treatment IgM fell (from 25 to 11 — but more recently rose to 26) and HGB rose (from 68 to 116, and later 125 — but more recently fell to 85) — each cycle was 21 days: Mon-Thur-Mon-Thur and then a week off — we decided against Eprex treatments to see if the HGB would climb anyway (which it did)
4d.  side effects from first treatment during the first two Cycles on 2 treatment days had 2-3 hours fatigue in the afternoon following the morning treatment — also have had 2 or 3 brief sessions of fatigue on non-treatment days (seemed to be a random thing) — from Cycles 4 to 9 no fatigue — later there was sometimes slight fatigue on treatment day and some arthritis-type flare-ups came and went (all of which has stopped with the end of treatment) — the only side effects that contiued beyond 2 months after the end of treatment were a very minor amount of PN — consisting of slight numbness in the pads of the toes and occasional slight throbbing in the feet (which became tired if standing a long time in one position but had no difficulty with long walks) — some other patients have had much worse PN so I have been lucky — since then the PN effects have completely reversed
4e.  benefits from initial treatment IgM dropped from a high of 24.8 to 11.3 (a month after the end of treatment) — but had been moving sideways in last few months of treatment; HGB didn’t do much until Cycle 5 — but then rose from a low of 68 to 116 at end of treatment — since then up to 125 — however, period of remission following Velcade treatement was disappointingly short (1-1/2 years only) — Dr. Chen now thinks that Velcade is probably best used in combination with other chemo rather than alone
4f.  date started second treatment (and treatment type) Sep 20, 2005 (CVP-R)
4ff.  date ended second treatment Apr 3, 2006
4g.  details of second treatment Sep 20/05 started on CVP-R (Cyclophosphamide, Vincristine, Prednisone, & Rituxan) once every 4 weeks for 6 months & finished on Apr 3/06 — also took Eprex for a few weeks at the start — CVP is of course well researched (being the old CHOP less one ingredient) — and Rituxan in combination with either CVP or CHOP is now much used — Dr. Chen recommended the CVP-R and that was fine with me — some doctors prefer R-CHOP, the only difference being the added H (hydroxydoxorubicin)
4h.  side effects from second treatment well, wow, these sessions were a lot more strenuous than my treatments with Velcade — the chemo tended to last 9 or 10 hours (mainly the Rituxan) — the slow speed of infusion being necessary to control the various (well-known) side effects: shaking like a leaf, other times sweating profusely, then itching everywhere, then running a temperature, then needing oxygen, etc. etc. — the first week following each monthly chemo session tended to be marked with fatigue, insomnia, some coughing, minor headaches, some bloating, very slight nausea (but the fatigue was the most noticeable) — another apparent side-effect of the CVP-R chemo was a significant deterioration in my teeth — I’ve had strong teeth all my life but suddenly in the 18 mos following CVP-R I’ve had 6 root canals, a huge number of fillings and reconstruction, and apparently a lot of dental bone loss
4i.  benefits from second treatment my hemoglobin has gone up to 151 (far higher than it was after the Velcade treatments); and my IGM has gone down to 3.26 (briefly 2.26) (far lower than it was after the Velcade treatments)
4j.  add further rows for additional treatments (3rd, 4th) or summarize in whatever way you wish na
4k.  any other comments you want to make about your treatments na
4l.  future treatment plans na
4m.  hematologist or oncologist initially Dr. John Matthews at Kingston Regional Cancer Centre but after my enrolment in the PS-341 (Velcade) clinical trial was under the direction of Dr. Christine Chen of Princess Margaret Hospital, Toronto and have continued with her throughout the Velcade, then later the CVP-R, and since then monitoring every 3 mos
4n.  CAM supplements taking various vitamins, also Aloe Vera Juice and Udo’s Oil (flaxseed oil etc.). Had also been taking IP6, CoQ10, and Ai/E (Antigen Infused Colostrum/Whey Extract) but cut out the last three during Velcade treatment (since Dr. Chen was worried about possible interactions with the treatment) — after the Velcade treatment ended I went back to the CoQ10 — for more info see my CAM discussion page — Dr. Chen felt there were no problems continuing these supplements during the CVP-R treatment — I’ve since started a most aggressive supplementation (“Longevity MultiPack”) recommended by Ray Kurzweil and Terry Grossman
4o.  regular exercise? had stopped working out immediately pre-Velcade when HGB dropped into 70s but then started back — during 2005 (post-Velcade) I basically did 3 workouts per week and was feeling fine — although the cardio (treadmill) was always hard — during the CVP-R treatments I generally avoided the first week after infusion (because of fatigue) — after conclusion of the CVP-R I returned to my regular regimen of 3 workouts per week — but then 4 or 5 mos ago I got behind on other things (I know — no excuse) and have temporarily not been getting out to the gymn — hope to get back there soon
5.   other info
5a.  is there anything you have found particularly helpful in dealing with the stress of your disease? I try to focus on enjoying life — WM does concentrate the mind on not wasting time (though I still sometimes do) — I have not found it very stressful
5b.  any other comments about your WM, your treatment, side effects, or anything else you want to mention .
5c.  any other comments you wish to give about yourself In a past life I was a chartered accountant (indeed, a partner of Jim Bunton in Ernst & Young — again, small world!). I left that world in 1988 to write poetry and short stories. But returned to do some institutional consulting in the early 1990s to keep bread on the table. Now I am retired again (and finally). Latest activity is a late beginner’s attempts at composing music. But also worrying a bit about our current seeming denial about the effects of passing the oil peak and running out of oil during my grandchildren’s lifetimes. My website can be seen at http://www.rodmer.com/. I’m very appreciative of all the work the trustees at the IWMF are doing and occasionally check the talklists with interest (though I am not a frequent contributor). I also appreciate very much the work Arlene Hinchcliffe continues to do in organizing the Toronto WM Support Group and that she and Jim Bunton did in getting WMF Canada incorporated.Any WM patient or care-giver is very welcome to phone me (Rod Anderson at 905-372-2410) for more information or if you have any questions. [More phone numbers which may be of help to you can be found on the IWMF Lifeline]
6.   Summary Table of Numbers
item at at start of at start of at start of worst now
—- diagnosis 1st treatmt 2nd treatmt 3rd treatmnt —-
6a.  dates—> Dec/01 May/03 Sep/05 na Oct/07
6b.  IgM (g/L) 16.8 22.8 26.2 . Sep/05
6c.  Serum Viscosity 1.7 2.2 ?? . Jun/03
6d.  HGB (g/L) 115 72 85 . Apr/03
6e.  Platelets 211 184 182 . Jun/03
6f.  Other . . . . . .

Additional notes:
In each Velcade Cycle, platelets were knocked down to the 80-100 range by the end of 4 treatment days but bounced back into the 220-260 range after the 10 rest days between Cycles (platelets only living about 10 days anyway).