Mike has AML

[Sandy L]

When we went to doctor on Friday we were told that the BMB showed 70% blasts and that it is AML. The doctor wanted Mike to have induction chemotherapy immediately but we asked for the weekend to come to terms with what direction we should go. ( We are also dealing with other family obligations and had to make sure that they were in place. – My MIL and FIL moved back from Nj to be in FL and My MIL was recently told she has Pancreatic Cancer. She was treated with CHEMO in nj but she was just too weak to keep it up. She is 94) The moving truck came on Fri and delivered all their furniture and I needed to unload the boxes and settle them in. I also interviewed care givers and we have decided to hire one of the ladies. My Sister in law arrived today and she will now take over so that I can concentrate on Mike) ( Enough of my woes – there is lots more but that part was necessary so that you know why we took the weekend before doing anything.

Mike’s doctor is affliated with a local hospital. He feels that the administration of the induction chemotherapy is …matter of fact and that any facility is qualified. I keep remembering everyone repeating over and over that you need a center of excellence. He also said that after the chemo he would need the transplant. (He was always so against the transplant)

Mike had a platelet transfusion last week and his WBC are very high. Since Friday he is so white.. for sure he need Red Blood Transfusion.
He has had a lingering cold and still has remnants of the cough. This last antibiotic seems to have helped ( Z pack )

I know it is very important to start the chemo but how do i get into Sloan Kettering in NY or Hackesack UMC in NJ. on such short notice? I think we might get into UM Sylvester in Miami because we did go there a year ago when we saw the transplant doctor but he is no longer there. UM Sylvester Cancer is new to the transplants and thye said that they are not accredited as MDS Center of Escellence YET but will be soon.

What do we do? I am afraid othat if he gets an infection they will not know what to do?

What questions do I ask besides what sub type AML it is? I feel like such a fool that I did not know that this should all have be done before anything went wrong and we were faced with such decisions with maybe no time to get to a qualified hospital.

thank you everyone and even though I have not posted in a long time I always read your posts daily.

Help???

Terri, Patti, Neil,

[Neil]

Hi Sandy,
Understand you are in Florida?
Can you get to see Dr Alan List at Moffitt Med Center in Tampa. He is one of the best

[Terri]

Sandy, Moffitt would be the place to go. Dr List is the MDS specialist.
They hopefully could get you in quickly, Hope all works out, will keep you as always in my prayers

[patti]

Sandy,

I am sorry you’ve been hit with all of this at once! What a lot to handle. I agree with Neil and Terri about Moffitt and my feeling is that if Dr.List knows where Mike is at today he’d have him in there this week. If it’s at all possible, try to call him today! Those folks know the urgency of AML so they’ll understand the need to get him in right away.

If you decide on a transplant: pray, make sure Mike is eating well and you are both doing everything you can for his body naturally and go forward and don’t look back! It’s too easy to second guess ourselves and you just have to go forward and know you’re doing what’s right for you and Mike. One thing I’ve noticed from the leukemia board is that folks who had AML and got transplants have done remarkably well and don’t seem to have as near the issues as those folks here who’ve had MDS (not transformed to AML) and gone for transplants. I do not in any way, shape or form understand why but for some reason they have tons of success with transplants from AML. But DO go where they’ve done tons of them and I think Moffitt fits that.

Praying for you. Hang in there. We’re all pulling for you.

Patti

[Jerry]

Sandy …

I am a little confused as to where you are, but you mentioned Sloan Kettering in NYC. If I were you, I would call Audrey Hassan here at the MDS Foundation and see if she can get you an emergency appointment in NYC. She did wonders for me at Cleveland Clinic. Her number is 1-800-MDS-0839. Good luck.

Jerry

[Sandy L]

Thank you all for the quick response. I tried to post yesterday but my eyes were closing. It was a terrible day. Such red tape from the insurance company and the doctors office.

I will try to give you a little update. We have Vista (HMO plan with open access) but only for the tri county area ( Broward, Dade and Palm Beach in Florda). We can only go to specific hospitals in those counties. Moffitt is in Tampa. For the transplant we are being thrown into United Health and that opens us up many more hospitals in many other states. I wanted ny or nj since my childfren live there and i would have a better support team.

After 6 hours on the phone I was able to get a referral to go to University of Miami Sylvester Cancer Center in Miami. It is part of Jackson Memorial. We will be seen by a new doctor Marcia Escelon. She just joined the transplant team. We went to Tampa when Mike was first diagnosed and saw Dr Saba. We went out of network and the cost for the 4 hours was almost $7500.
We also saw Dr. Hugo Fernandez at UM Sylvester who headed up the transplant team there. He has since left and went to Moffit ( so we can’t see him now for the induction therapy) They have not replaced Dr Fernandez yet but the transplant team is still active and functioning. Dr Goodman is acting head until they can hire someone. I called and all the doctors were too busy to see Mike and they are all going to a convention on Wed (tomorrow), leaving Dr Escelon behind, so that is why we are seeing her,

It was a choice of staying with Dr Melo and going to a local hospital or leaving and going to UM (teaching hospital and Cancer center) and using their newest doctor.

I hope that it is the right decision. As far as the transplant goes I will start investigating again after the 7 days of chemo.

I do not know what subtype AML he has – I have asked but still no response.

Very scared and do not know what to expect with Induction Chemotherapy, I know it is heavy duty but…how will Mike feel? Will he sleep all day? WIll he be in much pain? What can I do to make sure that he stays strong ( mentally as well as physically)

I thank you all for any insight and of course your well wishes.

Hope your days are better than mine.

Sandy

[Alice S]

Hi Sandy

Can’t give you advice like Terri, Patti, Neil and Jerry as yet, but I just thought I’d let you know that I will be thinking of you and Mike and will pray that you will find the ‘right’ people to help you along the way. It makes a real difference.

My Mom and I had a rundown from the Doctor on what will happen during chemo and BMT or SCT, but I have forgotten it all for now – actually it’s not pleasant, mom decided to rather wait and see if her MDS progressesd, well it did and so now we wait till a donor is found and then we will face it again.

The most important aspect is your positive attitude and your will to fight. Believe that you will succeed!

Sandy, a big hug to you, you need it. If the sun is out take a moment to let it shine on your face and know that there’s always hope.
Alice

[patti]

Sandy,

I don’t know enough about induction to actually give you specifics but I would highly encourage you to get on the leukemia/lymphoma patients forum and start asking questions under the “Living with AML” heading. There are some very knowledgeable folks there that have all been through induction and know what’s like. If you go to the leukemia/lymphoma website (I don’t have the address offhand but you can google it and they are the first ones to come up) the patient forum link is on the left side of the page towards the top of the links list.

I think going with a cancer center is far better then sticking with a local doc even if the center doc is fairly new. When those other doctors get back there will be more folks to confer with – not just her. Don’t be shy to ask her to confer with the others either!

Hang in there,

patti

[Suzanne]

I think like all else Induction is different for different people but I have to say it was not nearly as bad as I was expecting. You actually receive the drugs a very small part of the time. The rest is watching and taking care of any problems and infections. I am not sure whether induction is different in preparation for a transplant and even three years ago I found that different places were using slightly different combinations of drugs. I did loose my hair & all food tasted like cardboard but they were able to keep the nausea you hear so much about taken care of with drugs.In a cancer center, they have lots of experience making it as easy as possible

[chuckk333]

It is very difficult to remember all that the docs say in a consultatiion, so I take a tape recorder with me and record the whole time during the appointment. None of the docs have objected.

I was wondering how Neil, Patti and others know or find the information on the MDS docs around the country.as to who is good and who is just average. The doc I saw at City of Hope was one they assigned me. He told me the whole dept meets every week to discuss each new patient, and they come up with a consensus on treatment recomendations.

[chuckk333]

BTW, I am in Colorado now and skiing, as long as I get a CBC every 3 weeks to monitor how things are going, and I should not ski if my platelets get below 50 K.

[Author]

Posts