1942 / Class of '04 / Type: IgG Lambda LC / PBSCT / Died 12-26-07
Hello, my name is Brandie and my father Bruce Botelho was diagnosed with MM IgG Lambda light chain, Stage III at age 61 in October 2004. My dad was born in 1942 and raised in San Jose, CA where he still resides with his wife Diane of 37 years. My dad's worked in the automotive industry for 11 years and in construction for 25 years. He had always been in good health besides having bad knees due to running in races, and he seemed to get sinus infections every time he caught a cold. Other than that, he had no major illnesses or allergies.
In 2002 he seemed to get tired, taking naps on the weekends, which everyone thought was normal because he was working so hard in construction, and after all he was no spring chicken (I believe that was the first sign of MM). Then during the month of July 2004 he started to feel a pain in his back. For two months he let it go and assumed it was a pulled muscle, it never went away and started to get worse. He finally went to see a local doctor at SJ Medical, where a doctor agreed with him and told him to take some muscle relaxers and give it a few months to heal. Well, the pain went from his back to the front of his stomach and it spasmed 24/7, so he went back to the doctors and requested a CT scan which confirmed multiple lesions all along the spine, pelvis, and ribs. It was a complete shock to all of us, we thought he had a torn muscle or torn cartilage not Cancer! He was having the pains in the front because he had a nerve in his spine that was being pinched by a lesion. The doctor said the brain sends pain signals to different locations of the body from the part that is damaged.
He was immediately taken to Valley Medical Hospital to have radiation done on one of the larger lesions on his spine. He was given steroids. The horrible spasms that he endured for a month vanished after one treatment of radiation and have never returned since. My dad had 10 treatments of radiation but he never lost any strength or movement in his extremities. It took 24 hours for the hematologist-Oncologist at Valley Medical to find out what type of cancer he had. His urine protein level at that time was 1.94. He had a bone biopsy which confirmed 100% plasma cells in the bone marrow. He had another CT and MRI and a bone skeletal survey, many urine and blood labs were completed.
The doctor at Valley was Dr. Levit's who was a great doctor. He recommended that my dad start the VAD chemotherapy for 6 months then proceed to have a High-dose chemo with Stem Cell transplant at Stanford Hospital. He had a pic line put in his arm for the VAD chemo. My dad did wonderful with the VAD, his hair only thinned and he had no nausea. Starting in November, 2004, he stayed in the hospital for a week at a time to receive the VAD each month for six months. He was in no pain. He was very tired during those six months, taking two naps a day because he was restless at night, and didn't sleep very well. The only side effects he had from the VAD were an increased appetite (he gained 20 lbs. but he lost about 10 before he was diagnosed, from the back pain and spasms) and changes in the level of sugar in his blood. He was treated like a diabetic having to receive insulin shots while taking the VAD, and took Actos when he was at home to control his sugar levels. He was also taking Zometa.
After two treatments of VAD he developed a blood clot in his leg, for which he took Lovinox shots. That was a scary time because blood clots can break away and travel to the heart and cause a heart attack. So he had to limit his movement, wear a long sock that covered his entire leg and while he was sitting down, he had keep his leg elevated until the clot started to thin. After the six months of VAD, his urine protein level went from 1.94 to.50! Even though he wasn't in remission, a couple of months after he finished the VAD, he started the Stem cell transplant process. His doctor at Stanford is Dr. Goldstein who gave my dad a few options, and he decided to do the Tandem Autologous Stem cell transplant which are two transplants a couple of months apart.
He had his pic line taken out and a catheter was inserted in his chest. He had to take Cytoxan, which was one night in the hospital, and then a week later he started taking the Neupogen shots twice a day. Then he started to lose his hair but still has some eyebrows and hair on his arms and legs (he wanted to shave his head, beard and mustache before it really started to fall out which was a great idea) and still no nausea. He had to do another bone biopsy. A few weeks later he came down with shingles on his torso. They did not get too bad, but the doctor post-poned the transplant until the shingles were healed, which took a few weeks. Then he was given Melphalan (in-out same day of clinic-no stay in hospital) and on June 30th 2005, a couple days later, he received his own stem cells infused into his bloodstream (transplant). As soon as he was infused with his stem cells he sneezed and coughed a few times and then vomited once (this is normal side effects). I recommend that one sits up when getting the transplant because my dad was lying down and pulled a back muscle by sitting up so quickly to vomit.
A week after the transplant he got a fever of 100.5, so he went to the hospital and was given antibiotics. He had one platelet transfusion because his platelets fell to 12.0 and one blood transfusion when his hematocrit was at 28.0 His shingles came back again, so he was given Valtrix for two weeks after the transplant. That made his numbers stay low, so the doctors took him off for a few days but his numbers started to go down.
It has been 3 weeks since his transplant and he has felt nauseous every day, but does not vomit and no mouth sores yet, thank God. He has lost his big appetite, eating only one small meal a day. Getting out of bed to walk to the bathroom is a struggle because he was so weak and tired. So as of today, July 25, day 25 since his first transplant, here are a few of his numbers: WBC: 3.4; Hemoglobin: 12.8; Hematocrit: 37.0; Platelets: 29.0; and Neutrophils: 64.5.
My mother was having to play nurse which was extremely overwhelming at times, especially after the transplant. I think it should be mandatory that all patients have to be admitted to the hospital after that procedure for at least two weeks. Since my dad was doing all this as an outpatient, he had to go to Stanford every day for a month. When he was first diagnosed he was very depressed, but overall he has surprisingly kept his spirits up. It really helps to have a lot of family and friends supporting you. My dad never had much patience, but now I would say he has more then ever. He has kept a sense of humor about this whole ordeal and just takes one day at a time. He has always been a very strong man both mentally and physically and this cancer has only made him stronger. Now he has to do this all over again in about 60 days. He just wants to get the transplants over with and regain his energy back, play with his grandsons and go camping!
January 20, 2006: After my father's first transplant, we received the great news that he was in remission! He had another high dose chemo of Melphalan two days before his second transplant on September 22, 2005 and it went very smoothly. He recovered from this transplant very quickly unlike the first one. He had to wait a few weeks longer than originally planned to do the second transplant because his Shingles were acting up. I think everything went so well this time around because his Shingles were under control . He has been taking Famvir for the Shingles, Nexium for his heartburn, and Zoloft daily. He is still very tired but is regaining his energy little by little. He is able to drive and can now eat outside food which he is very excited about (he had to wait 30 days after transplant) because he was getting sick of my mother's cooking. He now has to get checked once a month at Stanford and then he will be referred back to Dr. Levitts at Valley Medical Center to see if he will need to be on any maintenance drugs.
Today is Jan. 20 and my dad is doing well, he is no longer on any medications and had another bone biopsy last month and shows no signs of MM, though he still has not regained all of his energy yet. I hope to give the next update with the same wonderful news.
April, 2006: On Jan. 29, dad started to have tingling and numbness in his right hand with pain around his right shoulder blade. The doctor at Stanford thought it was a pulled muscle. He let it go for another couple weeks. The pain started to get worse and worse, so my dad went to see his doctor at Valley Medical. They did CT scan and it showed a lesion was pressing on his spinal cord causing the tingling and numbness in his arm and hand. We were devastated to find out the MM was back after only 4 months of being in remission after having the stem cell transplant. He immediately had 10 sessions of radiation to shrink the lesion and lessen the pain. Then he started to get pains in his lower ribs and legs, he lost about 20lbs. in a few weeks. After the radiation, he started taking Revlimid and Dex in order to lower his numbers and get the MM under control. When he is not on the Dex, he is very tired and weak, but the week he is on the Dex, wow, he can go a whole day without taking a nap!
I believe before Jan. 29th my dad was in denial, that he had a disease-cancer that was not curable. He thought it would never come back, so he has been very depressed when he found out he had a few new lesions. My mother also took it really hard, she has to look at him every day and see how tired and sad he looks. Since he started the new drugs, he has been out of pain, thank God! He has good and bad days, but overall he is a very strong man that is willing to do whatever it takes to fight this cancer. Thank you to all those who have prayed for my father and I ask that you please continue to keep him in your thoughts and prayers. We just want him to live a pain free, as normal life as possible. I hope to give a better update next time around.
January, 2007: I regret to inform those reading this that my father passed away peacefully on December 26, 2007 at his home in San Jose, CA. He started having some pain in his leg and back and this made him not hungry which in turn made him lose a lot of weight. He went from 160 lbs. to 140 lbs. in a monthís time. The doctor basically ran out of drugs to treat him with and because his numbers were all so low, there was nothing more anyone could do. The only thing we could do was to hope that his numbers would go up and a new drug combo would come into existence. Unfortunately, neither happened and so his kidneys started to fail and he got pneumonia. He went home after a night in the hospital, getting fluids and blood transfusions which were not helping him anymore. He went into Hospice care for a week before he passed. I feel compelled to tell how his final days were because it was a shock to us and I wish someone would have told us that this is how things might happen. So if you donít want to know how my father passed please stop reading now.
My father took a turn for the worst very quickly that last week which is still very hard to accept. That last week was very difficult for my dad and us because he was not able to respond except for an occasion grunt here and there. It got to a point where he could no longer get out of bed; he would not drink or eat anything and was in a coma like state. He seemed very peaceful and not in much pain but then again he wasnít communicating very well. Sometimes when we would roll him over in bed to change his briefs and clothes he would moan or grunt. My family and I were not ready for the lack of motor skills, body control and not having him be able to speak to us was even more difficult. During the last 36 to 48 hours he just slept. He passed away in his sleep thankfully and he knew we were all there and it was time for him to be with God. I thank all those who kept my dad in your thoughts and prayers, for it did keep him here on earth for 3Ĺ years since his diagnosis. He never really had any bad side affects from all the many chemo drugs he tried and he had great doctors and nurses that helped him throughout the past few years. I will continue to pray for all those that are still fighting MM and hope you achieve or stay remission for ever!
If anyone has any questions please feel free to email me.
brandiel(at)charter(dot)net [by daughter Brandie]
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