Long Island, NY; firstname.lastname@example.org (son)
1927 / Class of '84 / Type IgG / MGUS to MM / Thal / Died: 10-05
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 symptoms.
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 Oncologist.
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 continue....
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 asymptomatic.
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 the chemo.
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.
As previously mentioned, I was taken off the A + P treatment, and have been off it for 14 months without any further treatments.
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:
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 were:
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 went away.
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 to.
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.
September ’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.
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 3½ 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.
August '04 Update: Fifteen months have now past since my last update. In the last update, I was in a PS 341 trial, (Velcade) doing fairly well. As previously mentioned, my IgG had been bouncing around in the range between 900 and 1400 (three to five months into the trial), the first time it was in the normal range in nineteen years. Towards the end of the trial, my IgG was slowly increasing, and I attributed that increase to the dosage that I was receiving, which was the lowest I believe was permissible in the trial, 0.7mg/sq m. At that point, in the trial, I was feeling good and my peripheral neuropathy was not as annoying. It was also at that point that Velcade was approved by the FDA and at just about the same time my trial was over. I was under the impression that Velcade treatment would continue after the trial was over if it was being beneficial, however that did not seem to be case. The trial doctor advised that I should not take any more treatments as they really did not know the long-term effects of Velcade, and so I have had no MM treatment besides monthly Aredia for the past fourteen months. During these fourteen months, my IgG has slowly risen to its present value of 3630. Only recently, my Oncologist has prescribed 50mgs Prednisone every other day. As of this writing, it is too early to tell its effect. In general, I have been feeling well. I do have my off days however, where I just feel a bit 'crappy', fatigued and just feel "yecchy", but I have my good days where I can paint a room's ceiling and walls (despite my spouse’s objections), moving bushes, planting, and doing pretty heavy work, but I do have to pace myself. For some strange reason, I can't seem to work at the same pace as I did twenty years ago. (Please don't take that last sentence too seriously).
Summing up my present condition:
Stiff fingers and occasional cramps (sometimes painful) where the finger (could be any finger) wants to go someplace where I don’t want it to go, but I just massage it and in few minutes it’s OK again, then it starts again… but finally it quiets down. When it gets stubborn, I usually drink some quinine water. I really do not know if that does any good, and I’m sure a bit of Gin in the Quinine water would help, but as tempting as that is, I do not drink alcohol at all… don’t think it goes too well with Neurontin and Elavil.
Stiff feet (sometimes up to my knees)… bothersome at times but I try to walk as much as possible. When the weather is cooperative, my better half and I walk about four miles; a good long walk seems to help the stiffness. The way I usually walk, I don’t think anyone could guess I have something wrong with my feet; but there are days people sure could tell.
Weakness and fatigue, and feeling not too well. On these days, my spouse keeps asking me what do I feel. I just cannot put it into words, just feel not up to par (but, I really don’t what par is any more) Just cannot seem to correlate these feelings with anything I have done or eaten or what the doctors have done. Luckily, it doesn’t happen too often.
During my last visit to my Oncologist, he mentioned that at his last staff meeting, they were discussing the use of Velcade a second time. So possibly, if my numbers keep rising he may start me on Velcade. Should be interesting.
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