Anyone have to endure a protected environment, i.e. isolation or bubble, for their chemo treatment?
I did 30 days in a PE at MD Anderson and was not allowed contact with anyone except doctors, nurses, food service, a priest, and Eucharistic ministers. Not allowed showers and even had to save my BMs. Could only talk to visitors/family through a window.
Anyone had this experience?
That's insane. I have no idea what they were dealing with that was unique but I imagine there was something they saw as really tricky.
They insisted I have showers and wash the germs off. I was given an occasional day off during induction but after transplant, they would ride my ass 'til I got into the shower. My visitors were told not to bring flowers or such but otherwise, I was given the run of the hospital, even outside, and was allowed any visitor who showed up.
I was limited to the floor the week I was on chemo, of course. But that was because they didn't want me spilling that caustic junk on their carpet where no one had training on how to clean it up. They were protecting themselves, not me.
Again, I can only figure there was something about your situation where they were particularly concerned about infection. But i have no idea what.
My chemicals were as follows:
He will receive Clofarabine 22.5 mg/m2 (IV over 1 hour, days 1-5; then followed by Idarubicin 6 mg/ m2 IV over 30 minutes days 1-3; then followed by Cytarabine 0.75 g/ m2 IV over 2 hours days 1-5. Cytarabine should be given 3 to 6 hours from the start of the Clofarabine infusions.
This was before the transplant phase completely. It was the first go to treat my AML. After the first round failed, the doctor gave me the exact same chemo in five days and let me out of the hospital.
I think the PE thing was part of how the original trial was set up and I had to have the PE if I wanted the trial. One of the two chemicals above was an add on to the normal AML regimen.
I heard of one man who checked into the PE and checked out the same night. The 30 days was more than he could handle.
When I had my transplant, I got up every morning and took a shower and had pretty much the same restrictions as you. Only time I could not walk the ward was when I was getting blood or platelets. With the PIC line I almost wished that I could just take a sponge bath instead.
My mom was in a PE at MD Anderson for 30 days last summer. She was on a trial also. But it really was a good thing for her. She is 89 - was 88 then, and I believe that is what got her through the first round of treatments without her getting really sick because her white counts and ANC went down to 0 with the treatment. They said the reason they had portable toilets instead of regular bathrooms is that even the water coming up through the pipes in a commode could harbor bacteria.
Did she achieve remission?
Yes, the PE is really good to prevent infection.
After my first round of this chemo failed to achieve remisison, they gave me the same chemo again and let me go right away. I got a really high fever about a week or two after and had to be readmitted via the ER. My blood pressure went way down and I ended up in CCU for a night. Not a pleasant experience for me or my family.
I was really concerned about using the restroom in PE, but found it to be all right. On my first night, a nurse who I never saw again (I think he was an angel) came and told me how to use the portable toilet. His simple instruction alleviated my concerns. After my PE experience, I was hospitalized for 30 days in a unit where we could shower. I found the sponge bath I used to give myself somewhat preferable to a shower as having to shower with a PIC line and several IVs was pretty hard.
Who was your mom's leukemia doctor?
Yes, I had this experience. March, 2011. Same place, same amount of time, same procedures. Watched streaming TV and movies on my ipad. Sat around too much and ordered from the great room service menu waaay too much and gained weight! Loved that room service all day and evening....best part of the whole ordeal for me. The food.
Food at MD is the best, but it still gets old after a couple of weeks. The menu was better when I started in 2010 but then in September 2010, they made it healthier. It used to have great fried foods and such, but the dieticians cleaned a lot of that off the menu.
I was always afraid to order much greasy food as I knew my stomach might be throwing some fits. I stuck to oatmeal and pretty bland stuff most of the time. Never got sick until I was in for my transplant. That chemo is killer.
They told me that they had complaints about the "healthy" menu they developed, so by March, 2011, they had brought back many of the "bad" unhealthy foods like french fries and hamburgers, cake, etc. I had plenty of anti-nausea medicine, so my appetite was fine. I was in a study, there were different doctors who came around and checked on me when I was in PE. I have a chemo port left over from my breast cancer treatment (2009-2010). That is how I got AML. Even though I had a chemo port they still tried to put a pick line (PICC?) in me, but couldn't. The chemo port is much easier to manage and not as much of a problem with hygiene. They had me pretty scared about being exposed to germs, so I thought I would be safer in the PE. I achieved CR after my induction last March and have been getting chemotherapy every 5 - 8 weeks ever since. Now I see Dr. Koller in the leukemia dept. of MDA. I have not had a transplant yet, but I have a match and I am waiting it out right now. I might wait to see if I relapse, I am not sure. I am trying to decide and not rush into the transplant. You were diagnosed in 2010 and had a transplant? Are you doing well?
Always hopeful had her 88 year old mom in PE? Wow. I can't imagine being in PE and getting chemo at 88. It was very difficult at 58.
I can understand why they bought back the good stuff. I had lots of anti-nausea meds as well, and had a good appetite. I just dreaded barfing so I tried to eat bland.
I had the PICC line and have heard the chemo port is easier to manage. Don't know why MD has opted for PICC save they invented it. And it is not as complicated a surgery to insert.
Glad you're in remission. I never achieved CR but my blast count went down and was thus eligible for the transplant. My local doctor said I could wait for blasts to come back, but my MD doctor talked about a window of opportunity and I was told that recurring Leukemia can be vicious and harder to put down. I wanted to wait for the transplant, but my wife and I discussed it and it seemed the only safe step. My Leukemia doctor, Ravandi, said that a relapse after failed induction was pretty likely.
My transplant was from my brother, a 10 point match. I had AML. Since the transplant 11/8/10, I have been Leukemia free. The worst part of the transplant for me was the after affects of the really killer chemo. I could not swallow and nothing was appetizing. However, as my counts recovered, and that took a while and some ivig (iv imunglobulin), my appetite came back better than ever. Listen to your doctors with regard to the transplant. They know your chances of relapse and the likelihood the transplant will be successful.
Congratulations on being leukemia free!! That is just great! How old are you? You were fortunate to have a 10/10 related match. I do have a 10/10 unrelated match. I have many transplant risk factors such as secondary AML, previous chemo and radiation for breast cancer, older age and a high (30%) possible mortality rate. I have different opinions about what to do. My doctor is trying to get the leukemia to an undetectable level in my bone marrow. Right now, it is detectable at .02. If I get to 0, my local onc tells me I will relapse for sure anyway, one onc (transplant) tells me 50/50 chance of relapse, Dr. Koller (MDA leukemia onc) tells me 30% chance of relapse if I get to 0. So I am in limbo, trying to educate myself as best as possible. Sometimes I think I should go for the transplant while I am in remission and doing well (now) and other times I think I should wait and see if it returns. I am very conflicted and when the doctors don't agree, it makes it even harder! I have heard/read the same things that you have about waiting until a relapse. I am so frightened that I would not survive the strong chemo to prepare for the transplant. If I survive, there is also a 30% chance I would have some kind of permanent disability. There is only a 30% chance I would survive a transplant without morbidity or disability. Pretty sobering statistics, but I will do it if I have no other choice. What subtype of AML did you have? That can make a difference. Good luck to you and I hope your remission lasts for many more years!!
I'm 56. Reading your posts reminds me of all the emotions and thoughts I went through pretransplant. I had a 20 percent chance of dying in the first two years. Either from infection or GVHD. So far so good. I was scared really bad though the whole process of being diagnosed and treated. Father Neumann at MD Anderson was a great counselor. He let me cry and handed me tissue after tissue.
My wife would never tell me what to do, but I knew what she thought. She took my local doctor to task for even suggesting I wait.
Sounds like you have it rough. I hope you have someone to share all your feelings.
I was also afraid I would not survive the chemo as right before I went in a friend I made at MD died of chemo poisoning. It's all pretty darn scarey. But you make your choice and move on. I really feel that the footprints in the sand story fit me as I was carried through this whole ordeal.
Well, you give those of us facing a transplant hope! You need to continue to do well! If you did not respond to the first induction, I have heard that is not a good sign. There are many sub-types of AML, each with a different prognosis. I also had a friend die after trying a transplant, and I think that adds to my fears. I have had it rough. I have had lots of Chemo and radiation for breast cancer (tell your wife I found my own tumor 3 months after a "normal mammogram"). There are 15 kinds of breast cancer (who knew?) and I had the most aggressive. The chemo gave me AML, the most deadly leukemia. I have had much chemo since my induction last March. That is why I think I would probably die from the high doses of chemo required for transplant. They tell me that even if I survived the transplant, the AML might still return! Prayers and faith are the only reasons I still have hope.
The chance of relapse is there no matter what treatment you have. MD has a transplant protocol in which they use a drug to try and get all the hiding leukemia out of the marrow before they give you the chemo that kills it. There are no guarantees in any of the treatments.
One of my doctors told me that 90 percent survive the transplant, but if you're in the 10 percent that is irrelevant.
One thing that scared me was the word transplant itself. Transplant with regard to the infusion of the stem cells is not accurate, and it is not like one gets cut open and has something removed and then inserted.
You have been through way more than me for a lot longer time period. Keep fighting. You can beat this. Talk to your doctor about your concerns that you won't be able to handle the chemo. I did and he reassured me. And as hard as it may be, take it a day at a time. The good Lord will there for you. I know it's cliche, but He does not give us anything to carry that we cannot handle.
If someone had told me beforehand what my treatments would involve I would not have believed I could have done it. When I look back, I know that Jesus carried me. The footsteps story is for real.
When all is said and done, you'll be stronger than you ever imagined. I'll pray for you.
Sorry I didn't answer you back about my mother - I didn't see that part of the post until just now. My mom is not in remission, but she had been taking the Vidaza for 11 months. Her doctor at M.D. Anderson was Garcia-Manero. She did the trial there will him (or part of the trial with Vidaza and Revlimid) but was too harsh for her. Now she is at University of Alabama at Birmingham (UAB).