I'm curious if those of you who have had a stem cell transplant had it done as outpatient. If you did, what was your experience? Did you end up back in the hospital?
Thanks,
Kim
Hello, Kim, my husband had three outpatient stem cell transplants at the Multiple Myeloma Institute in Little Rock, Arkansas. The only problem was during the 2nd one -- the night after his Melphalan infusion, his heart rate went way up. We took him to the Emergency Room where they controlled the situation, and then they were still able to give him his stem cells within the 24 hour time period.
Actually, the hospital is the worst place for a stem cell patient. Too many germ, viruses and infections, although some hospitals still insist on doing it as inpatient. I don't understand it.
Best, Joni
Hi Joni,
Thank you for responding. My reason for posting this question is because a SCT is on the not too distant horizon for my boyfriend. Not really knowing what to expect, we are both apprehensive.
Joni, if you don't mind me asking, werre you your husband's caregiver? My concern is dealing with & managing the "sickness" (nausea, vommiting & diarrhea). Was this an issue?
As far as there being a much higher risk of viruses, germs & infections in the hospital, I do totally agree with you.
There is just so much to wrap your head around with all this. Sometimes it just gets overwhelming!
I am happy to hear your husband did well. Wow, 3 transplants!! God bless him.
Thanks again,
Kim
Joni Aldrich said:
Hello, Kim, my husband had three outpatient stem cell transplants at the Multiple Myeloma Institute in Little Rock, Arkansas. The only problem was during the 2nd one -- the night after his Melphalan infusion, his heart rate went way up. We took him to the Emergency Room where they controlled the situation, and then they were still able to give him his stem cells within the 24 hour time period.
Actually, the hospital is the worst place for a stem cell patient. Too many germ, viruses and infections, although some hospitals still insist on doing it as inpatient. I don't understand it.
Best, Joni
Actually, Kim, while Gordon did well with the transplants, he did not survive. But, it was the disease, not the transplants. His myeloma got out of control because of 5 months of ineffective treatment for a highly aggressive type of myeloma before going to the MMI in Little Rock. They are awesome, and where you get treatment is so important with this disease.
The process of stem cell transplantation is not so different from other treatments. Besides the harvesting of cells, there is the chemotherapy and then the transplant itself is more like a blood transfusion. Afterwards, they monitor the patient daily with blood work, blood transfusions as needed, IV's of potassium/magnesium or other nutrients that go down...whatever is needed to balance the patient as the white blood cell counts drop.
To be clear -- the only thing that saved Gordon for the 2 years that he lived was the transplants. He did go into remission, but his disease was in his central nervous system (through tumors in his spine).
Yes, I was absolutely his caregiver for 1-1/2 years. The melphalan chemotherapy was pretty tough, but they have great medications to help with the nausea and other side effects. I've worked in cancer world for the past 8 years now, and it's no worse than other cancer treatments. There is a chapter on stem cell transplants in my first book: The Saving of Gordon; Lifelines to W-I-N Against Cancer (www.thecancerlifeline.com). You do have to be aware of germs...get the large bottles of rubbing alcohol, and wipe down everything (doors, stair rails, sinks). Great for cleaning sinks, and I even used it in a mild solution to mop the floor. You will also have to be aware of what he is eating; no raw vegetables unless you know where they've come from (salad bars are a no-no, but he won't be a restaurant when his counts are down anyway). They will provide you with a list of dos and don'ts.
Please ask your oncologist about T Cells.See the article below.
http://www.dddmag.com/news/2013/12/multiple-myeloma-t-cell-treatment-working-trial
I do have some shows on multiple myeloma, many of them from the MMI on my iHeart Talk Radio Website. Check them out there! http://www.iheart.com/talk/show/Joni-Aldrich-SOS-Supporter-of/ (It's been a while, so you may have to go deep since I do radio 5 days a week.) I also do a Wednesday show called Caregiving SOS for you.
Please feel free to reach out when you need to! Best, Joni
Oh Joni, I am so very sorry about your Gordon. This certainly can be a relentless disease. I am sure he received very good care in Little Rock and I agree where you get treatment is indeed very important. I am very thankful my boyfriend has a top notch myeloma specialist who appears to be on the cutting edge of the latest treatments etc.
The actual transplant doesn't frighten me or him because as you've described, it is pretty much like receiving a blood transfusion. The apprehension comes from the Melphalan chemotherapy. But, as you pointed out, there are medications to counteract the issues that may possibly arise. I admit, I am an over-thinker and my boyfriend is a second-guesser...not a good combination! What I don't think of, he does and vice versa. We both need to relax and take this one day at a time. We will get through it.
Thank you for all the information you have given me. I will certainly look into all of it and will share it with my boyfriend. I'm sure it will answer a lot of our questions and help to ease our minds. We will check out your radio show as well.
God bless you for all you do!
Thanks again,
Kim
Joni Aldrich said:
Actually, Kim, while Gordon did well with the transplants, he did not survive. But, it was the disease, not the transplants. His myeloma got out of control because of 5 months of ineffective treatment for a highly aggressive type of myeloma before going to the MMI in Little Rock. They are awesome, and where you get treatment is so important with this disease.
The process of stem cell transplantation is not so different from other treatments. Besides the harvesting of cells, there is the chemotherapy and then the transplant itself is more like a blood transfusion. Afterwards, they monitor the patient daily with blood work, blood transfusions as needed, IV's of potassium/magnesium or other nutrients that go down...whatever is needed to balance the patient as the white blood cell counts drop.
To be clear -- the only thing that saved Gordon for the 2 years that he lived was the transplants. He did go into remission, but his disease was in his central nervous system (through tumors in his spine).
Yes, I was absolutely his caregiver for 1-1/2 years. The melphalan chemotherapy was pretty tough, but they have great medications to help with the nausea and other side effects. I've worked in cancer world for the past 8 years now, and it's no worse than other cancer treatments. There is a chapter on stem cell transplants in my first book: The Saving of Gordon; Lifelines to W-I-N Against Cancer (www.thecancerlifeline.com). You do have to be aware of germs...get the large bottles of rubbing alcohol, and wipe down everything (doors, stair rails, sinks). Great for cleaning sinks, and I even used it in a mild solution to mop the floor. You will also have to be aware of what he is eating; no raw vegetables unless you know where they've come from (salad bars are a no-no, but he won't be a restaurant when his counts are down anyway). They will provide you with a list of dos and don'ts.
Please ask your oncologist about T Cells.See the article below.
http://www.dddmag.com/news/2013/12/multiple-myeloma-t-cell-treatmen...
I do have some shows on multiple myeloma, many of them from the MMI on my iHeart Talk Radio Website. Check them out there! http://www.iheart.com/talk/show/Joni-Aldrich-SOS-Supporter-of/ (It's been a while, so you may have to go deep since I do radio 5 days a week.) I also do a Wednesday show called Caregiving SOS for you.
Please feel free to reach out when you need to! Best, Joni
If there's ever anything that I can do, please let me know! You have a shoulder to lean and/or cry on. It's good that you are seeking out support groups and people to help you both get through this. I will keep you in my prayers.
One other note...the treatments for MM have come a long way since my husband was going through treatment in 2005. However, it's always good to be aware, alert and involved in your boyfriend's care. Ask questions. Get copies of all medical test results and keep a journal. Today's patients can't afford to be complacent. Cancer is a complex disease, as you have already found out. Speak up and work together to make decisions, but the final say is that of the patient. My Friday show is The Literate Patient, and we talk about everything from making sure that doctor's and nurse's wash their hands to patients' rights. All really important. Oh, and make sure he uses mosquito protection. One of the men going through treatment with Gordon died tragically from West Nile (don't mean to scare you....it just pays to know).
Drop me a note if you need anything! Joni
Thank you Joni. Your kind words & encouragement have helped me more than you know.
Its great to have the support of people who have been down this road.
Thanks so much!
Kim
Joni Aldrich said:
If there's ever anything that I can do, please let me know! You have a shoulder to lean and/or cry on. It's good that you are seeking out support groups and people to help you both get through this. I will keep you in my prayers.
One other note...the treatments for MM have come a long way since my husband was going through treatment in 2005. However, it's always good to be aware, alert and involved in your boyfriend's care. Ask questions. Get copies of all medical test results and keep a journal. Today's patients can't afford to be complacent. Cancer is a complex disease, as you have already found out. Speak up and work together to make decisions, but the final say is that of the patient. My Friday show is The Literate Patient, and we talk about everything from making sure that doctor's and nurse's wash their hands to patients' rights. All really important. Oh, and make sure he uses mosquito protection. One of the men going through treatment with Gordon died tragically from West Nile (don't mean to scare you....it just pays to know).
Drop me a note if you need anything! Joni
My husband just had his stem cell transplant at Mayo Clinic in Minnesota, they have all the bases covered for everything that could possibly happen. We stayed at a hotel that has subway tunnels to the Mayo complex so it was easy to get around all of the complex buildings are connected by subway tunnels or skywalks. He did end up in the hospital for less than a week the hospital is part of the complex so it was easy for both of us. Everyday a doctor would visit him early in the morning then report to the transplant team then later in the morning the team of five including doctors would visit him again and go thru how he was doing. The care and his doctors including the doctor leading his transplant team was outstanding throughout the entire time he was there.
Thank you for sharing Sheltie. I'm glad all went well for your husband. Sounds like he received excellent care.
I had high dose chemo with stem cell rescue at Hopkins in Baltimore in April of last year. This went fine. I was hospitalised just once overnight as a precautionary measure. My experience ended up being easier than average, so they told me, but they are equipped to handle also those who experience greater difficulties. This procedure is routinely done by them on an outpatient basis. If you want to worry about something, what I would worry about is the record and experience of the particular facility. While this particular type of procedure (otherwise known as an autologous transplant) is becoming fairly routine, it is not without risk and you want to make sure that the center where you are going is well set up to handle problems and provide advice and support. You want to make sure communications are good. Hopkins is excellent for that. And I would suppose that the other thing to worry about is just to be conscientious and follow the instructions that they give you. For example, if your fever goes up above a certain level, you need to come in to be checked out. Things like that. I saw another response about scrubbing things with alcohol and that seems somewhat over the top to me. Again, if you are at a center where they do a lot of these procedures and are clear about what you need to do as a caregiver, then just do as they say -- you don't need to go beyond it. Trust the professionals.
Another thing: I would encourage anyone getting a stem cell transplant to enter a clinical trial as well, if possible. I unfortunately did not do this. This way you can get a chance at treatment options beyond the standard therapy. There are some trials that are specifically geared to people getting an autologous transplant.
Thank you Victor for sharing your experience with SCT. I am very happy to hear all went well for you. This is on the not too distant horizon for my boyfriend. His Dr. is a myeloma specialist (according to the IMMF, the best in the area) and the facility is excellent. I have no worries concerning his Dr. or the hospital.
Just this week he had went through the procedure to begin stem cell collection. He received a central line port in his chest and was given Cytoxan. They kept him overnight in the hospital after the administration of Cytoxan and he was released the next day. Thank God, he did very well. No issues. Home health care will begin home visits next week to draw blood and when his numbers are where they need to be, they will begin collecting stem cells.
Reading other's experience's has helped me to realize we are not alone.
Thanks again for sharing your experience with me. I truly appreciate it.
Kim