Desperate, please help

[HopeW]

Hi, guys.
My doctor here wants me to do BMT evaluation next Wednesday.
But since I both have lupus and MDS with del(7). They think this is the only way to go. But now I am having this fever of almost 101 every morning and then I would sweat and temperature breaks down. My heart rate were like 100 although I just got 2 units of blood. And blood pressure low. I tapered prednisone from 40 to 30 around 10 days ago. And my counts crashed too.

Do I have to do BMT at the hospital once the evaluation is done?
What they kind of tests are they going to do when they do the evaluation?
How do you choose your BMT centers?

I am really scared and exhausted from all those frustration from life.
God bless all that are suffering.

[HopeW]

And, since I have blast, do they need to bring the blast down before BMT or just go ahead to do it?
Another question:
Is the transplant different for MDS and other disease? Or once BMT, they do it same way only depend on your organ function?

[GoodDay5150]

Hi HopeW, we are all sorry to hear of your issues. I had a BMT 4 yrs ago for classic PNH, so no blasts, no AA, but 4 bone marrow biops, many meds, etc etc. A BMT is a very involved process as you prob alrdy know. A suitable donor needs to be located, but you will also require numerous scans and tests for heart function, kidney and liver function, etc etc. The BMT center will prob be dependant on your insurance provider, where you live, etc. I had an HMO at the time of my transplant, so they did some things, and some testing was done by another clinic that is affiliated w/ the hospital where the actual inpatient facility is located. I have read that hospitals associated with medical schools are usually a good choice, but in my situation, everything assoc w/ the actual BMT was done at a large metropolitan hospital. It's overwhelming in many respects, but I did it, and many more have done it as well. Many of us here are happy to help you through this.

I found this when searching monosomy 7. Acc to this info, which of course is not the same as asking an actual medical doctor, it seems that these issues are poss inherited/ genetic/ related to your MDS, etc.

https://en.wikipedia.org/wiki/Fanconi_anemia

Mario

[HopeW]

Thank you Mario. So glad to hear that you are doing well after the BMT. It is encouraging to know . God bless you to get better and better.
They searched donors and I was told that there are around 10 donors could be a perfect match. But they asked me to take the evaluation test before contact the donors for BMT.

I don't know if I need to go to some other hospitals or not. This one is with university though, just isn't one of the best. It is close to my home though(2 hour).

[Neil Cuadra]

HopeW,

You'll get the best advice about whether you should have a transplant from doctors with the most expertise with MDS and lupus.

If your decision, based on their recommendation, is a transplant, and you are healthy enough and have an available donor, then the best place to have the transplant depends much more on a medical center's bone marrow or stem cell transplant experience than on what diseases you have. There are also the practical concerns of insurance coverage and the goal of staying close to your support team of family and friends.

The National Marrow Donor Program provides information and statistics to help patients choose a transplant center.

It may be wise to have the transplant center that you choose do the BMT health evaluation, because they'll be evaluating you against their practices and protocols. The evaluation is likely to be a general health checkup and a full review of all health issues you have. They're looking for anything that increases transplant risk, for which they use the unpleasant term "comorbidities".

In many cases, doctors use drugs to try to bring an MDS patient's blast count down before transplant. It's a tradeoff, because they want to minimize your need for transfusions, and the longer they delay a transplant, the more likely transfusions become and the more there's a chance of a health setback.

[HopeW]

Hi, Neil,
Thank you very much for your kindness and the valuable information.
They already scheduled me for the pre BMT evaluation next Wednesday 23rd and they said they would do the lung function, heart function and other test as well. I am afraid that they assumed I will do transplant at their place, which I am not sure because this is the only one I had seen and I haven't seek for second opinion yet.

I don't know if they will get offended if I cancel the evaluation. Because if no other center wants to treat me, I might eventually have to do it here.

I already have ferritin level 3500+ from lots of transfusions. I haven't been able to get Exjade and the local hematologist refused to give me IV desferal with transfusion no matter what evidences I provided. (He is already very resentful of me and threat to see me any more)

My insurance is BSBC PPO,I think it should cover the BMT in other centers.

I need to think about how to talk to them.

My relatives are all overseas so this makes me even harder because I have nobody here to turn to and to take care of my son. Life is just so hard.

Thank you again for your help.

HopeW

[Neil Cuadra]

HopeW,

Don't worry about hurting anyone's feelings by canceling or delaying an appointment, if you're not ready for it. All that matters is getting you the best healthcare. If you're getting bad service, then it's worth considering other doctors or treatment centers. Perhaps you're already at the place to get good care. Just make sure you have confidence in the team you're working with and be straightforward in telling them what you want.

If you haven't had a second opinion then I don't think you should assume this is the only center you have to choose from. Insurance may indeed cover other treatment centers in your state. Some plans have less coverage for care from an out-of-state center, but you won't know until you ask.

[HopeW]

Thank you, Neil.

I am having low grade fever in the morning for the past serveral months. It would go away after heavy sweating. I am on prednisone 40 for around 4 months. And had a tapering to 30mg sept 4. I got 2 units of blood sept 14.
But my heart rate didn't decrease from that. I am having higher fever now (39)
Heart beat above 100 at rest. Could not sleep.
What could be reason? I am on levoquin 500mg. Urine culture is negative.
Pred withdraw too fast? Blood infection?
Felt so bad right now, should I call to be admitted?

[DanL]

Hope,

As usual, Neil is giving you great advice. To reiterate some points, it is probably better to get any workup testing done at the facility that you are going to do a transplant with in the future, or at least have the testing coordinated with your oncologist. Second, the workups are only good for a short period of time since MDS can move slowly or rapidly, or shift between the two without giving you a courtesy call to say what it is doing. Lastly, just because you have had a workup done, it does not mean that you have to go through with the procedure. That is your choice right on up until it is done. The tricky and potentially expensive part is insurance coverage and the potential need for pre-approvals, which may cause further delays.

I did see one more question about blasts. I could not find the article right away, but there has been some research that shows that there is a number around 13% marrow blasts that you want to be below prior to transplant in order to reduce the risk of relapse the most. It is only one study and I cannot speak to the strength of the study and its ability to predict outcomes, but it is one reference point to work off of.

Good luck working through your decisions. Trust your doctors, ask good questions, make sure you are comfortable with the answers before proceeding.

Dan

[GoodDay5150]

Hi Hope, yes Neil and many others here will give you good advice. I thought about something else after my last msg. Your insurance company may have an actual transplant coordinator who can also assist you with your needs and help in answering ques., schd appts, etc.

Mario

[HopeW]

Dan, Maio, Neil, Thank you all for your advice, they are great. I am admitted to the hospital early this morning because of high fever (102+) although I am already on Predinosone 30mg and levoquin 500mg.
Local hematologist is checking if there is infection.
I also told him my concern about second opinion and the pre test, his suggestion is Similar to yours.
So I think I will just give them a call to cancel the test on Wednesday, but only keep the appointment with the doctor and let him refer me to see other facilities and then decide where to do the BMT.
We will also try to contact the insurance company to see what they can help for choosing BMT center.

[Neil Cuadra]

Good luck, Hope. I hope they quickly get a handle on your fever.

[DanL]

Good luck with your appointments, and be sure to do all that you can to kick the fevers. A lot of MDS patients experience fevers of unknown origin. All we can do in these cases is treat the symptoms and keep on top of your hygiene and at least as importantly as the hygiene of those around you They can be carriers of so many diseases that their normal systems don't have any issues with, but your system is susceptible to. Even when my WBC look pretty normal, I am pretty insistent that guests only use the guest bathroom, that they don't directly handle food, and that they foam in and foam out -

[Cheryl C]

Hi Hope - the rapid heart rate could be caused by the MDS. When I had 10% blasts I noticed this whenever I lay down. It still happens occasionally even now that I don't have high blasts.

[HopeW]

Hello, my dear friends. I got a lot comfort and encouragement from u all.
I was given IV antibiotic ceferpime yesterday for a day and my white count (0.7->0.4)and platelet (48->26)decreased to half of where they were. Red was down almost 3 points too. Any of you had problems with this antibiotics? The fever is still there, this morning it went up to 102.5 at around 9:30 am and they let me took some tylenol,although in the early morning at 7:30am I already took prednisone. Then I sweat and the fever was gone at 11.
So far chest x-Ray is clear, urine and blood culture are negative(they said need more time to have result)
CT scan was ordered for abdomen discomfort.
Got really frustrated. They might want to transfer me to the medical hospital where they want to do BMT evaluation for me, because I see my rheumatologist there for 8 years, although the local hematologist still insist that he had every resources as them and don't need any advice from them(:<.

Neil, thank you for your kindness.
Dan, your advice is very valuable, I will be more careful in the future.

Cheryl, the blast is for marrow or blood? I don't have this high heart beat 100+ before though.

[Cheryl C]

Hi HopeW - I hope the medical experts are getting your issues sorted. It has obviously been very difficult for you to make progress.

Antibiotics are known to reduce white cells. It can take up to a month for them to recover after a course.

At the time when I had regular trouble with a racing heart, my blood blasts were 9% and marrow blasts 10%.

[HopeW]

they changed antibiotics to meropenem and add an anti fungal medicine voriconazal in the past 2 days. So far urine/blood culture are negative . Chest X-Ray repeated, both are clear. Ct scan of ab unremarkable.
But I still had this fever now it is 102.9. Counts were lower, I probably need to get some blood HGB 6.4 and wCB only .3 my heart is pounding fast.

Don't know that to do now. Before it seems it would go away 3-4 hours after the pred kick in. Now, it seems higher and hard to rid of without tynelol.
Is this adrenal gland insufficient?

Feel so bad.
Love and blessings to all of you!

[PaulS]

Hi Hope - sorry you have to deal with all this. Ideally you should find a Center familiar with MDS and who does a lot of work with complicated transplants. Many centers will have free or inexpensive lodging facilities specifically for traveling transplant patients and their families during and after the transplant. They will also work with you financially and with your insurance company.

Insurance is important to check with -there are a lot of pre-transplant procedures and tests that probably need to be pre-approved. How your insurance deals with insurance is critical. I have a PPO with an small local network but access to a large national extended network too - I was shocked to discover that with a transplant the rules were all different - as there were to transplant center in the small network - i did not need to use the extended network but rather could go to any Center of Excellence in the Country and have everything paid for by the small network provider rather than being covered by the extended national network - even though all of the major centers were part of that network. I believe my costs and copays will be lower - try and figure out where you need to be and then work with them and your insurance to figure out how to make it happen.

you will have a lot of follow ups so finding someone close (Duke maybe?) but there are great facilities in NYC (Weil Cornell, Sloan Kettering) MD Anderson in Texas, the Moffitt Center n Tampa, Johans Hopkins are all places to consider.

The facility who does the transplant will want to do their own tests and the will be extensive and will need to involve specials in other fields relevant to you specific conditions - you will need to have a transplant team include recommendations from these other specialties and be followed by them during your transplant.

You may need to get all your other conditions managed before the transplant which may take time - which may give you time to get on an iron chelator and lower your blasts - which could be good. The conditions may also effect the type of transplant you can have (myloablative vs. non-myloablative). It will also take time to find a donor.

Please don't panic or despair, but please do find a great MDS trans plant center and doctor you feel comfortable with ASAP. Call them and explain your situation - they will talk over the phone or via email. If they don't then find someone who will. Communication is very important. Find a relationship you feel comfortable in. Do you have family or friends who can help you?

Best of luck - you will be OK -.

Paul

[HopeW]

Paul, thank you very much for your information and encouragement. I appreciate so much especially because I knew you are waiting for engraftment and it is difficult time.I had been pray for you those days.
I only have a cousin who is at Atlanta. So I am thinking of Emory because Emory seems to be one of the center of excellence of MDS.
The problem is the fever now. They just started hydrocortisone 50mg every 6 hours to see if the fever will be controlled.
The insurance part I will show your message to my husband and let him to look at. Thank again.

[PaulS]

Hi Hope - boy that's a lot of cortisone - enough to make anyone a little crazy - they just put me on 80 mg - which is messing me up in a number of ways - can't sleep, high blood sugar - I've been on 10 mg for a while but the boost really makes a difference in how I feel.

Emory is a great place, especially if you have family. Whatever your insurance provides, there is always an exception for special treatments or doctors that may not be otherwise covered - I think making an argument for Emory (or any other specialized treatment center of excellence) under your circumstances should be easy if your company is operating in good faith - you require complicated procedure with multiple other diseases requiring their own special treatments and close cooperation with a transplant team. There are not many places you can get that and none near your home, so they'll have to cover it someplace - Having a family member close by can be enormously helpful.

Good luck - you're going to do great. Paul

[HopeW]

Paul, Thank you for your advice and encouragement. I thought hydrocortisone is less intensive as prednisone 1:5 or some thing like that so it is not that high. Yes, prednisone could make people go bananas. Having mood swing and sweating, confused mind, hard to get to sleep and increased heart rate, just a few I had experienced.
Today my fever seemed decreased until this time 98.9. But I still feel bad .Not the same feeling after sweating and fever gone. Still a feverish feeling. Still on iv antibiotics and antifungal and got Iv desferal for the first time. A lot of fluid, my ankles are swelling.
I try to be positive, although it is hard.

Prayers and blessing going your way, hope your engraftment soon.
Hope

[johnwc]

I had blasts of 9% and ready for BMT but a few days before they spiked to over 20% and had to go thru a 28 day chemo conditioning hospital stay.

So, 9% is a good number for BMT. So, says my docs at Oregon Health Science U,.

Good Luck, JOHN

[HopeW]

Thank you John. I lived at Oregon before. Like Portland so much.
So you did your BMT at OHSU?
Was the blast bone marrow? They need to do a BMB before the BMT?
My blood blast constantly change. Some time none, sometime 3%.
What do they monitor? Blood or marrow?