Middlebury, VT; Written by his wife, Robin; firstname.lastname@example.org
1947 / Class of 00 / Type: IgA / Thal+Dex, relapse / Died: 4/9/03
My husband was diagnosed in April, 2000 with Multiple Myeloma (IgA). My husband grew up in a rural area, on farms and such. He was in Vietnam during the war. Most of his life he has been fairly healthy. Has had two back surgeries for the same ruptured disc.
At the time of diagnosis he had been real sick for 4 months. Had lost 30 lbs in that time, and he never really had any extra weight. He had been seeing his PCP as his back was really hurting. He was not telling the dr. all the other stuff that was going on. He had no appetite, was constantly tired, would get dizzy, bright lights blinded him (sunlight, snow, etc.). He had a physical in March and the dr. said he was fine. On Easter Sunday he could not stand up to put food on his plate and I called the dr. the next morning and we went in. The dr. called that evening and said he wanted my husband in the hospital right now. During this hospital stay we found out that he was extremely anemic, hypercalcemic, hypo magnesium, kidneys were shutting down, liver function was way down, and he had a bleeding ulcer. This is when we were told he had MM.
They started treatment with chlorambucil right then. He was put on folic acid, iron, and prevacid and also has had to take a lot of sennacot. He was also started on Aredia (once a month) and Procrit (once a week). He stayed on that for four months, and it wasn't working so they decided to start VAD. During this time period he was given at least 20 units of blood along with a couple of units of plasma. As he was in such bad physical condition they needed to hospitalize him for the first 3 cycles. At this time we learned that the protein count was at 12,000. After 3 cycles in the hospital he had 2 cycles at home. He had very few side affects from this treatment. He did loose his hair after the 3rd or 4th cycle. Was tired a lot. Although the treatment seemed to work in the beginning it stopped after the 1st or 2nd cycle. It was then decided to go with thalidomide and Dexamethasone. (Protein count at that time was 7600).
He has now been on the thalidomide/Dexamethasone for 13 months (450mg per day of thal., 40 mg. for 4 days every two weeks of the Dex.). His protein level is now at 1570. He is still very tired, his feet and hands are numb a lot of the time, and his legs ache after he has been on them for any amount of time. His dr. (hematologist/oncologist) is saying these are from the thal. but as this seems to be working well he really doesn't want to change the dose at this point. My husband finally got off iron pills a month ago, and hardly ever has to have an Epogen shot. He continues to receive the Aredia once/month. I know my husband is very discouraged a lot of the time as he is not able to do what he would like to do. He is not able to work much at all, and can only be on his feet for a few hours each day.
His doctor continues to refer to him as "his miracle". He never thought that my husband would be around this long given how advanced the MM was at time of diagnosis. He has often said that if thalidomide was not available, the outcome would have been very different. At the time we started the thalidomide, that was the last treatment available. Now there are some new ones out there that look very promising.
It has been a long struggle, and I know it is far from over. The treatment does cause a lot of side-effects, but if you think of the alternative - I'd say it was worth it, and my husband agrees (at least most days).
Update July, 2002: Not much has happened since original submittal of story. Rick continued on Thal and Dex - his MM dropped to 1040 in May - down from a starting point of 12,000! His legs remained very weak - he was not able to go more than 3 or 4 hours at a time.
On June 17, 2002 Rick was hospitalized with a pain in his side that was diagnosed as appendicitis and another abscess. They operated on June 28 and he came out of the hospital on July 6. During his hospital stay they discovered that Rick has rectal cancer, stage IV because it has spread to his liver. It is inoperable given the number of lesions on his liver. Because of the other infection and surgery they are not starting chemo until July 29 to give him time to recoup. Rick has totally lost his appetite. They have taken him off all medications for MM because the rectal cancer is the #1 threat at this point. Rick is having a hard time getting the will to fight this new cancer. It seems so unfair that he has fought the MM so long and hard and finally was getting some place and then this happens. He is very weak.
Rick hasn't been taking Thal or Dex since June 17. IgA test in May was 1040. Just had an IgA test that came back at 4180. Haven't been able to discuss yet with the dr. as he is on vacation. At this point I am just hoping that somehow we are able to improve Rick's mental outlook - which might give him a fighting chance.
May, 2003: Rick was started back on Thal (200 mg/day) and Dex in August as the MM was increasing, and he continued 5FU and Leukovorin for the colorectal cancer. Dr. was quite impressed at the response of the liver tumors. MM also decreased. Because Rick's legs were so weak and hurt, Dr. cut the Dex in half.
In or about December, MM started to increase. Rick developed a lump on the back of his head. This got quite large, and in February they did a biopsy which showed it was the MM. Dr. was gradually increasing the dose of Thal.
On March 19th Rick had an appt. for a CT scan of his liver, x-ray of his chest and head. He was scheduled for chemo on March 21. However, when we got to the Dr.'s office they decided not to give Rick chemo as he appeared so weak. Instead they admitted him to the hospital. Rick was in the hospital 3/21-22 and came home on Friday, 3/23. While there, he had a blood transfusion and two radiation treatments on the lump on his head. That night at home Rick was weak. Going to the bathroom, he fell and I was unable to get him up. Eventually we got him to the bed. Saturday he sat in his recliner all day dozing. We were unable to get him to the bedroom that night, so he slept on the couch. Sunday he was even sleepier. Both his daughters and their families came and visited. That afternoon Rick's breathing deteriorated. He finally agreed that I could call the rescue squad. He was taken to our local hospital, but was too sick for them. They put him on a respirator and transferred him to a major hospital 40 miles away. Rick spent 17 days in intensive care. The cause of this hospitalization was an undetermined infection. They classified it as sepsis. They were unable to get him off the respirator.
Given all he had been through, and with no hope of a better quality of life, Rick was taken off the respirator on April 9, 2003 at 4:30 p.m. He passed away at 11:30 p.m. surrounded by his family. I miss him so terribly - many times it is near impossible to go on without him. The courage that my husband showed throughout this horrible battle is awe-inspiring.
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