Sidney, OH; email@example.com
1958 / Class of '05 / DVD, pulsed Dex, Revlimid, PBSCT / Updated: 7/08
(By her husband, Steve.)
My wife Amy was diagnosed with MM in July of 05. We were crushed. After talking with her Oncology Drs. at James Cancer Hospital, in Columbus, much reading of literature and the Internet, we were still overwhelmed. We chose to go with her Onc for treatment. It was closer to home. He started her on DVD. Doxil, Vincristine, and Dexamethasone. After one treatment she developed neuropathy of her fingers, and sores in her mouth. Not the best results from the first treatment. He gave her IV antibiotics for three days to clear up the mouth sores. For her second treatment he stopped the Vincristine and backed off the doxil by 25%. He did this for three treatments. Another bone marrow biopsy and 24 hour urine collection, and another visit to James and it was decided to switch to Cytoxan, up the Dexamethasone (4 days on 4 days off 4 days on).
Here's where it got crazy... literally. In Feb. she had to go to the hospital, woke up and just didn't feel right. They told us her blood sugar was around 500. They kept her for several days. While there she had a drug induced psychosis, from the high dose of Dex. This was very stressful on the whole family. These "fits" went away after they took her off the Dex. Over the next several months she continued to get the Cytoxan and her counts came down. Even though she didn't have the "fits" she started being very paranoid, denial of the cancer, wanted to refuse treatments and didn't want to be around people. We started to see a Psychiatrist. They put her on several drugs. After several months of the drugs she seems to have improved. Right now she seems so lethargic, sleeps a lot.
Here is where I hope to hear from someone. I have looked up anything I could find on "chemo-brain". Don't know if the "mental" stuff is from her treatments , or if it's some sort of breakdown because of all she has been through. We have talked to several people who have gone through treatments, stem cell transplants, but nothing with the mind. Would really like to talk to someone that has.
April 25, 2007: We just returned from Amy's Onc. After a 5-day stay at the hospital, he wanted to review treatment options. She had bad chest pain so I took her to the emergency room. After a few hours they found she had developed three clots in her lung. They admitted her and started her on blood thinners. She was on Revlimid, her third cycle. She was also on birth control, which was required to get the Rev. Both have the potential for clots. She is going to do a 24hr urine collection to see if the Rev has done anything to decide if the med is worth the risk. She is doing a lot better mentally, since last entry and for the most part is doing well. She gets tired easily. We had our first wedding in Dec and our daughter has gotten engaged. I tell her she has a lot to stick around for.
We thank God for carrying us through this time, for we know we couldn't have made it this far alone . We also are thankful for friends, ones we know and some we've never met but talked to on e-mails. Love to hear from others, patient and caregiver alike.
July 2, 2007: In Jan '07 her onc started Amy on Revlimid. Any of you on it know all the red tape. You must be on two forms of birth control, even though in Amy's case she had been in menopause for a year and a half. After three months of this she developed blood clots in her lung. Her Onc took her off of it. We're not knocking the Revlimid. While in the hospital for the clots they did a 24hr urine collection. Her count before starting the Revlimid was like 2500 and after those three months it had dropped to 500. Currently she is on Velcade, which is a shot they pulse into her i.v., and Melphalan, which is a pill she takes for 7 days following her i.v. therapy. So far she is doing well with this, she doesn't get sick from the treatment. She is doing quite well since the psychosis is gone. She has even started working part time at a nursing home. She even plans to resume her college classes this fall, she had to drop out when the psychosis kicked in. She is working on a nursing degree. We have enjoyed hearing from a few of you out there, and would like to hear from more We are trying to connect with a Myeloma group, but haven't yet mainly due to distance. There is one in Columbus & one in Cincinnati both of which are about 2 hours from us So that's one reason why we like to hear from others.
July, 2008: In Aug.'07 we went to a LLS meeting in a suburb of Columbus. There we met Dr. Benson from the James Cancer Center at O.S.U. After talking to him we sat up an appt. to see him at the hospital. After several visits and lots of test Amy was set up for a stem cell transplant. In Oct she got a big dose of Cytoxan, and then sent home. The purpose of this is to drop your blood counts so that when your body starts to recover and produce new stem cells then they collect them. Amy lost her hair for the first time but her counts never came up to a level that they could collect. Devastated, we went home the next day with an appt. to come back on Fri. We felt that the chance for transplant was gone.
On that Fri. Dr. Benson told us about several other options that were trials being done at the James. We chose one, and just when we thought we were ready again this time my insurance at work said they didn't do experimental drugs. We came home disappointed again. But over the next month or so people at the James worked with my insurance co until they had worked out a plan so Amy could go forward. It was just after the first of the year '08 we went to Columbus for five days as outpatient. We would go to the hospital around 9:00pm get a shot of this drug, go to the motel and come back in the morning. We would get to the hospital at 7:00am, they would do some blood test and within the hour she would be hooked up to a machine that cycled her blood through and took out the stem cells and returned the rest of her cells to her. She did this five days and they collected enough cells for two transplants (if there is a need for the second).
We came home and returned on Feb 12 to the James where they admitted Amy. First they gave her a high dose of Melphalan, then a resting day, and on the 14 she got her stem cells back. She spent the next 15 days there, which was really less time than we were told to expect. The Drs were impressed with Amy's recovery. Over the next couple of months she had days where she didn't feel the best but the Drs kept reassuring us that her counts were coming back up and she was doing great.
Since the transplant we went to Arizona in April to walk in a 5k walk/run in memory of a niece we lost a couple years ago in an auto accident, our daughter got married in May, and this fall Amy is planning to return to classes, she had to stop again when she went for the transplant. God has been good to us through all of this. We have met and talked to many people with Myeloma and other cancers and hope we have encouraged them in some way. Amy always says that Faith, Family, and Friends have gotten her through.
Good luck to you all, and we love to talk to anyone. God bless you. Amy and Steve
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