Long Island, NY; Joelgramps@AOL.COM
1927 / Class of '84 / Type IgG / MGUS progressing to MM / Last Update: 4/03
In 1984 (age 57) I was diagnosed with benign
gammopathy due an IgG level of 2100. Nothing was done about it, and I just
forgot about it. In 1990, a routine blood test indicated a high protein level.
The IgG was 3500 and after various tests, including a BM biopsy and aspiration
the DX was MM. My Onc. MD advised that he would keep monitoring the IgG levels
and no treatment was indicated since I was asymptomatic. I went for a second
opinion with Dr. Rai at the LI Jewish Hospital (Good reputation and a heck of a
nice guy). He concurred with my MD, no treatment for IgG of 3500 for one with no
My IgG levels continued to rise very slowly,
and four years later, in March 1994 (still no symptoms) the IgG was bouncing
around between 5000-6000. At that point my Oncologist advised that treatment
should begin soon, and it would be Alkeran + Prednisone. Went for a second
opinion at Sloan Kettering and they advised that since I was asymptomatic, just
keep on watching the protein levels.
In Oct 1995, the IgG was about 6500, at that
point my Oncologist, started to look at the falling hemoglobin, which was about
11.5 and stated that treatment should start if HGB falls below 10 or if there is
any rapid changes in the IgG or HGB. Went back to Sloan for a second opinion.
They stated that when the IgG is about 7000 treatment should be started. Their
recommendation for treatment was Decadron, and would include Bactrim to protect
the lungs, Mycelex Trouches to prevent fungal infections in the mouth, and
Carafate to prevent stomach irritation. Needless to say, this treatment scared
the heck out of me, particularly all the other "stuff " to prevent
side effects. So now I had a second opinion about when treatment should start,
but a difference of opinion about what the treatment should be. The MD at Sloan
complimented my Oncologist (and he did not know who he was) for not jumping into
treatment prematurely as many do.
Since I was in Boston on business the
following month, I went to Dana Farber for their opinion. They advised that,
since I was just about at the window when treatment should start, they
recommended treatment of Alkeran + Prednisone, therefore concurring with my
In Jan 1996, my IgG was 7700 and HGB varied
between 10 and 11, by June 1996 my HGB was bouncing between 8.5 and 9.5 so my
Oncologist started treatment (still no symptoms). Treatment is 5 tablets of
Alkeran (2mg each) for four days in a row, together with Prednisone 20 mg 3
times per day with meals (and then two tablespoons or Maalox) for four days in a
row. The Oncologist is monitoring, mainly the WBC, and when it starts rising
after having fallen I take the A + P regime again. I have taken it for two
months so far. The only effects that I find, thus far, is tiredness at times.
August '97 Update:
One year has now past since I last related my MM story.... so let me now
I have had a total of eight treatments of A +
P in a period of 15 months and nothing has significantly changed. My IgG has
been bouncing around (between 6500-8000) for the past three years. During chemo,
it hasn't really changed. The Hemoglobin has been bouncing around (between 9 and
10.5) for the past 18 months (the same before and after chemo). I am still
My Oncol. believed that it's the chemo that's
keeping the MM in check and planned to continue with the same treatment. My only
complaint has been the loss of stamina. I thought it was due to the low HgB, but
the MD's don't think so, they say the body gets used to the low value. The MD's
thought that the loss of stamina was most likely due to the Beta Blocker I was
taken (administered after open heart surgery last Jan '96) and possibly due to
My Cardiologist has been weaning me off the
Beta Blocker, in fact my last dose was six weeks ago and lo' and behold, I am
feeling better, with much more stamina. Not with the stamina I used to have, but
not too bad at all.
Now here's the interesting part.... My Onc.
has recently given up his practice, therefore I started with another Onc. The
new MD stated that it was a tough call to start the chemo when the former Onc.
did, as he started the chemo about a month after I was discharged from the
hospital after having Staph Pneumonia that developed into septic shock. The new
Onc. said he would have waited until I was fully recovered from the Sepsis and
then see what the blood work looked like.. This Onc. stated that I appear to
have indolent MM, and he has taken me off the chemo and will observe me closely.
Should evidence of progression of the MM develop he would then put me on VAD or
pulse Decadron alone. He felt that the A + P was having no effect.
In general, the MM has indeed affected my
life.... but not too badly.... besides the anxiety of knowing that I have MM and
the 'basket case' I become while waiting for the results of my blood tests, I
still do the things I used to do, but at a less vigorous pace. I go for long
walks (no more jogging), I repair the house when needed (or when my wife tells
me to), do the gardening, repair the car, do the house cleaning when I have
sufficient time left from my other activities, I do volunteer work, once a week,
go out to dinner quite often. Being I know that I am prone to infections, I am
very conscious of crowded surroundings and stay away from such environments, but
not too obsessively. I stay far away from anybody that has a cold, I wash my
hands very often and carry anti-bacterial hand wipes and use them when washing
facilities are not readily available. I do drink a lot.... water, that is.
So now I'll see what happens now that I'm off
chemo... should be very interesting.
November '99 Update:It has been over two years since my last update, so I believe it's about time
for another update. Obviously, I'm glad to be around to give the update.
I'll give you a short synopsis of what has
happened, the details are in the body of the story.
- 1984 Dx of benign Gammopathy (IgG 2100)
- 1990 Dx of asymptomatic IgG MM, no treatment (IgG 3500)
- 1996 Treated with Melphalan and Prednisone (IgG 7500)
- 1997 Stopped M/P after eight cycles due to unresponsiveness (IgG 7800).
treatment for 14 months.
- 1998 July - started Dex, due to increasing poor factors, i.e. particularly
BJ, HgB (IgG 8900)
- 1998 July - Started Aredia
- 1998 Oct - Stopped Dex due to unresponsiveness (IgG 9120)
- 1998 Oct - Started Biaxin
- 1998 Nov - Started Procrit, (HgB 8.6)
- 1999 Feb - Stopped Biaxin due to unresponsiveness (IgG 10,200)
- 1999 Feb - Started Thalidomide (200mg, 250mg then to 300mg in three
- 1999 Sept - Stopped Procrit, (HgB 13) (IgG 4990)
- 1999 Sept - Developed Peripheral Neuropathy, side effect from Thalidomide
- 1999 Dec - Latest IgG was 3510
As previously mentioned, I was taken off the
A + P treatment, and have been off it for 14 months without any further
In February 1998 I asked the Onc. whether
other tests, besides x-rays, should be performed to determine if there is any
bone involvement. He did not think it was necessary, as all my bone surveys
(since 1990) have showed no involvement. He did however, schedule me for an MRI.
The results were that the T10 vertebral body was suspicious for myelomatous
involvement, and there were multiple lesions in the lumbar spine and sacrum
consistent with myeloma lesions. The Onc. was a little wishy-washy about
starting Aredia yet. He wasn't against it, but was not whole hearted for it; I
think he was still considered the x-rays as the standard criteria, however he
did prescribe Aredia five months later (July '98). The Aredia was 90 mg every
month for a two hours infusion.
Some routine tests in June '98 indicted that,
so the Onc. believed, the MM was becoming more aggressive and he believed I
should start treatment. His judgment was based on the whole clinical picture,
but I believe mostly on the fact that the Bence-Jones had increased which he
considered significant. The clinical picture consisted of:
- Bence Jones increased from 0.14 g/day to 0.726 g/day in one year.
- Serum viscosity was 3.7 (range is 1.4 - 1.8)
- IgG increased from 7000 to 8900 in one year (he didn't feel this was
- Globulins (total protein minus the albumin) were 10.7 (was 9.7 one
year ago). The optimum value is 3.2.
- HgB has decreased from 11 to about 9.6 in the past year.
I started Decadron in July '98, 40mg per day
for the first four days of the three-week cycle, together with Bactrim, an
antibiotic to prevent a type of pneumonia called PCP, which may occur in some
patients while on Decadron.
After three months, tests indicated that the
Dex was not working as the IgG remained about the same (9120 as opposed to 8900
nine weeks previously) and so did the HgB.
The remaining options the Oncol. mentioned
- M-2 protocol, which he said was "rough" and doubted it
would work since I did not react the Melphalan or Dex.
- VAD, which he said might not work since VAD is mostly Dex and I was
unresponsive to Dex.
- Biaxin, which he said has not been too successful in his patients,
but possibly helped some others.
I opted to try the Biaxin, being my only
symptoms were fatigue and I thought the Biaxin would be the least noxious.
Starting in Oct '98, I took Biaxin for three months, but did not react to it.
Actually, I did react to it: it really upset my stomach, but did nothing for the
MM. During that time (Nov '98) my HgB was pretty low (8.6) so I was started on
Procrit, 40,000 units every week.
The next thing was Thalidomide, started that
in Feb '99 at 100 mg, and worked up to 300mg by May '99.
Finally, I did react to something: The IgG
kept decreased from a high of 10,200 to its present 3,510 (Dec '99). The HgB
stabilized around 13. (Procrit was stopped in Sept '99 when the HgB stabilized
at 12). The side effects of the Thalidomide, has been bothersome: a rash, on
chest, but mostly on both legs, had that for about four months, then it just
I do have peripheral neuropathy from the
Thalidomide, it started out with numbness on the bottoms of my feet, and
progressively got worse, and now after being on Thalidomide for 10-1/2 months
the numbness is up to my knees and progressed from my finger tips to about half
my finger. The numbness is just annoying, it doesn't hamper my actions too much,
but it slows me down a bit.
I don't have any major loss of sensation,
actually it's quite livable with it, just darn annoying! So that's where I stand
now... If the neuropathy gets worse, I guess I will have to think about
decreasing the Thalidomide, which, at this point I will not do. If feel if
something works, leave it alone and don't mess with it until you absolutely have
As far as my general condition... My only
real complaints are lack of stamina and stiff joints (don't know if the stiff
joints are from the Thalidomide or not). Any work or activity that I do has to
be kind of slooow, and paced.
’00 Update: I have been on
Thalidomide for nineteen months now and peripheral neuropathy and lack of
stamina are my chief complaints. The neuropathy has really been getting to me;
however, I continue most of my activities (which has been curtailed quite a
bit). It is quite difficult to
bend; walking up stairs is a particular concern and I do ascend them with plenty
of moans and groans. Due to the
neuropathy, I have reduced the Thalidomide from 300mgs to 150mgs (in 50mg
increments every two or three months). So
far the reduction of Thalidomide has not effected the MM markers, but it has not
helped the neuropathy. Below are
some of the results since being on Thalidomide. The first figure indicates the
value just before starting Thalidomide, the second figure is the latest results.
- Total Protein 16.1 / 8.1
- IgG 10,200 / 2,170
- IgA <7.0 / 93.0
- IgM 10.0 / 78.0
- M Spike 7.3 / 1.9
- Globulins 11.2 / 4.7 (Globulins
=total protein minus Albumin)
- Bence Jones 1.43 / 0.03
The improvement of the IgG
was fairly dramatic initially, then it just kept slowly decreasing to its
present level. It took eleven
months for the IgA to return to normal, and eighteen months for the IgM.
Like everything in life,
one must pay for something that one receives, but I believe that having good MM
markers at the cost of peripheral neuropathy is not too bad a tradeoff.
April '02 Update: As of this date, I have been on Thalidomide for a
total of 38 months. As previously mentioned, I started out taking 100mg/day,
worked up to 300mg in three months. I stayed at 300mg for eleven months. During
this time the IgG was slowly decreasing, but the neuropathy continued to be
bothersome (luckily no pain), or I should say it was a real "pain in the
neck". The Thalidomide dosage was gradually reduced (because of the
neuropathy) by 50mg every two to three months until its present value of
50mgs/day (have been at 50mgs for the past ten months). The reduction in dosage
did not effect any blood readings, the IgG seemed to have stabilized at about
1850 and has been about that value for about a year. Unfortunately, the
reduction of dosage did nothing for the neuropathy. All other blood readings
have remained normal, or near normal, except the platelets which have ranged
from a low of 84k to a high of 133k. This decrease in platelets started to
appear about 10 months after starting Thalidomide (when I was on 300mg) and has
continued to be abnormal for the following 28 months -- that is, up to now. I do
not mean to imply that the Thalidomide was the cause of lowered platelets, I
just don't know. Luckily, I have no ill effects from the low platelets.
The latest IgG reading of 3/6/02 was 2130, the highest its been in fourteen
months. That higher reading could be within the lab's reading error, or just a
lab error, or perhaps it's an indication that the Thalidomide is becoming
ineffective. The next serum electrophoresis should tell the story. If the
Thalidomide is becoming ineffective, my Oncologist would then add Dex to the
present Thalidomide dosage.
In June 2001, I developed double vision and was hospitalized.. The diagnosis
was a mini-stroke, but the cause of the stroke was not ascertained. My guess
is... it was caused by Thalidomide. From various readings, it is mentioned that
Thalidomide tends to make the blood sticky and in some cases have caused
strokes. As an end result, the double vision was corrected by a new prescription
to my presently worn glasses. Upon discharge from the hospital, a blood thinner
was prescribed (Coumadin) which I will be taking indefinitely.
So that is my present status.......very annoying peripheral neuropathy, which
has limited my activities appreciably, lack of stamina, many days of feeling
"crappy", many groans and moans using stairs, no more golf, no more
jogging, lots of transient muscle aches and pains, can't fasten the top button
of my shirt, since I can't feel the button hole, got to look in the
mirror......however I am busy each day, my wife and I go for a walk every
morning for the newspaper (just about a mile), then we always find some place to
go, especially to walk, (have walked up to four miles on a good day), if the
weather is bad, there are always the shopping malls. We are rarely at home
during the day.
I still do most of the house repairs....but at a kinda slow rate....I'm lucky
that my wife has the patience to wait for me to finish repairing something;
however it is very gratifying to me that I can still do plumbing work lying
up-side-down underneath a kitchen sink. (not too easy to get in that position
and really tough to get out of it.
So that's where I stand to date, not too great, not too bad.
April '03 Update: One year has now past since my last update. Much has
occurred since then. I have continued taking Thalidomide (have been on
Thalidomide for 3 ½ years). My IgG had been slowly increasing, was in 1800-1900
range for about one year than it began to slowly rise to 3390. My Bence Jones,
as well, had increased. At that point my Oncologist suggested adding Dex. to the
Thalidomide. I was not thrilled at all about adding Dex since it has not very
kind to me in the past.
At that point I started to investigate MM trials that were available. Of the
many trials that were available I thought that PS 341(Velcade) would possibly be
the best, in that, I’ve read some good reports on it, and one of the trials of
PS 341 was an ‘open’ trial, as opposed to the many of the other trials which
were random trials. The ‘open’ trial was one in which the patient would know
what chemo he/she would be getting as opposed to the random trial where the
patient would not know if he/she was getting the chemo or a placebo. An added
attraction of the PS 341 trial was it was given at a hospital close to my home.
It was ‘ touch and go’ before I was accepted in the trial, for they were
concerned of my peripheral neuropathy which I developed while on Thalidomide. My
mobility seemed OK to them so I was accepted in the trial.
In order to start the trial, I had to stop Thalidomide for at least one
month, which I did, and at the start of the trial my IgG increased to 5110. The
first month of treatments was really a WOW !! I was constantly nauseous, had no
appetite at all, and felt really ‘crappy’. I felt so rotten that I was seriously
considering dropping out of the trial. The doctor prescribed Compazine which
helped the nausea, and they decreased the dosage of the trial drug, which in
general helped. The good side was that after one month of treatments, my IgG
decreased to 2370 and continued to decrease in subsequent months (three to four
months) and then bounce around between 900 and 1400, the first time it was in
the normal range in nineteen years.
During these months I felt pretty good except for my increasing neuropathy.
The MD’s were quite concerned regarding the neuropathy so they decreased the
dosage of the trial drug three more times during this period. My Neurologist
felt that my recent EMG, which he had just taken, was same as the EMG he had
taken two and a half years ago, in fact it was a little better, and felt there
was no reason to stop the trial due to the neuropathy. It seems the Neurologist
was more concerned about the results of the EMG rather than then the patient’s
annoyance (and sometimes pain) of the neuropathy.
After complaining a number of times my Neurologist prescribed Neurontin for
my neuropathy. This really didn’t help much until I asked him to prescribe
Elavil as well as the Neurontin. I have read in the MM archives that Neurontin
plus Elavil have helped some suffering from neuropathy. It took several weeks
before my neuropathy was generally much less bothersome, and I could go up and
down a flight of stairs without holding onto the handrail. Previously it was a
must to hold onto the handrail while uttering plenty of groans and moans when
going up or down the stairs. Presently I hold onto the handrail not because I
have to but just because it’s there.
So, that is where I am to date, feeling fairly well. Still have some
neuropathy, bothersome at times, but not too bad. I do complain about some lack
of stamina so as a result I just have to pace myself when I do the chores around
the house. If I maintain my present state, I will indeed be satisfied.