Hi Lora -
I just wanted to welcome you, although I'm sorry about the circumstances that have brought you here. You are young and at one of the best hospitals in the world for AML - these things work heavily in your favor! Keep your eye on the prize - you'll be back to restored, good health in no time. Big hugs.

Lora,

So sorry you had the need for an AML support group; however, glad you found this awesome group-we are here to help and be helped. I am also a mother of three daughters ages 13, 11 and nine and was DXd 16 months ago just after turning 48.

We all can relate to the AML roller coaster and understand the emotional phases on this journey although rarely the same. You have so many outstanding things in your favor: MD Anderson, more than one 10/10 match, complete REMISSION and the motherly drive to live to raise your sons and subsequent grandchildren!!!

Slow count recovery after consolidation is a VERY common topic here. I personally took twice as long to recover between treatment and stressed over it a ton.

Having anxiety regarding separation from your family is completely understandable but what a blessing to have your Mom there with you. With the ages of your boys, you not be able to spend much time with them as you recover due to your suppressed immune system-just looking for the positive spin :-)

Thank you so much for sharing and please stay with us and keep us updated as you travel the path to cure. I will be praying for you and your family.

Blessings,

Julie

Hi Lora

Welcome to one of the best groups I have ever seen! I too am sorry that your AML/MDS has caused you to have to join this group, but can say that I have found the people here to be very supportive and helpful. My son is 33 and he too was dx with AML/MDS and is awaiting a SCT. They are still narrowing down his donor and have a "few" for the final marker matching.

My son just finished his 3rd consolidation round after induction, so he is a little ahead of you, he was dx on March 24, 2014 and is a 3rd year Physc Resident at the hospital where he is receiving his chemo treatments, but will have his SCT at UC Davis in Sacramento, CA. Lucky for him the hospital is working with him and letting him do independent study when he is in the hospital and when his numbers are too low to see patients and while he is getting and recovering from his SCT.

They have been giving my son a Newlasta shot after each consolidation round and it has helped to bring his numbers back up fast, but he suffers severe bone pain as a result of it.

I will add you to my daily prayer list. There are a couple that have just under went their SCT, Tony (his wife Leapea keeps us up to date on him) and Twilight's brother, so be sure to read their threads and also Dave Brown has a link to his treatment journal, he was chemo only for his AML/MDS but reading his journal helped me get an idea of what to possibly expect on this rollercoaster ride.

Take care, stay strong and keep the faith that you will get through this and be cured.

Karen

Lora -- sorry for your problems but I can relate to them and I understand why you did not come aboard sooner -- neither did I. Nor totally sure why -- I know that discussion groups were available, but I preferred to leave it all in the hands of my med team. But once I was safely in survival mode I realized that I had a lot to offer especially to people who have been recently diagnosed. I hope that you feel the same way. You might not realize it now but you are unique and you might be the only person who can meet certain needs that other who join this list will have. So, welcome aboard and we look forward to helping you through your transplant and back to a normal life. Others who have young kids will give you some tips on how to handle being away from them. I am 70, going on five years of survival and chemo only, so will not be able to help too much in this regard. But I look forward to seeing your contributions in the future -- daveB

Thank you all for your responses. I feel a relief knowing that you are all here and you know (more or less) what I'm going through.

Thanks for the warm welcome!

Lora

Hi Lora, glad to hear from you in your post. Sounds like you have a great positive attitude.

You are correct about the rollercoaster as its down and up all the time. As you seem positive like you said its just a job you have to strive to getting the best outcome and no other outcome you will accept.

Do everything possible and even if it seems to the extreme (as in germ / keeping up strength) just do it... stay in your bubble and come out when its all over :)

Good luck hope to see you around

xoxo

Hey Lora,

I am also 44 and have 3 children of similar ages. For me this is relapse, I had AML 2.5 years ago, went through 4 rounds of chemo and hoped I was done. Relapsed in June, went through induction and remission (yay!), will soon go into consolidation and then SCT. My siblings don't match but I have a 10/10 donor (who I hope comes through, it's nerve wracking to know there's this 1 person who's a perfect match....and also a blessing at the same time...).

Where I live consolidation is done as in-patient (and in isolation for the duration of low-count time). For those of you who went home to recover, how does that work? Do you go in every day for bloodwork and any blood/platelets if needed? Do you stay home and on a neutropenic diet all this time?

Abby

Abby

I had induction and for rounds of consolidation and was allowed to be home between each cycle. I went in hospital for six days to receive chemo and then home. The rule is that you must live with in twenty minutes of the hospital. At day ten I started clinic visits every two to three days for labs and transfusions when needed.I have myself neupegan shot daily fir my white count from day ten until day thirtyish. This was a blessing as my counts took about sixty days to get high enough for subsequent rounds. My treatment took eight months and I lived in a bubble with no outside contact other than my husband and girls. I was blessed to telework full-time as I felt very well throughout. No infections not even a fever. For me, this option was a huge blessing

Julie

My sister Jo's consolidations are done as an outpatient at MD Anderson. She goes and has one chemo treatment at the hospital and then they release her home and she carries a pump with her home. The second round of chemo starts later that afternoon after she is home. She then goes back to the hospital the next day for another of the same. She does this for 3 days. She lives about an hour and a half from MDA but they still let her do this. She gets all her labwork at a local oncologist's office and then they send results to MDA and MDA tells them what to do next regarding transfusions, etc.

It's a lot for her to handle but she enjoys being able to be home during treatments.

I get consolidation at MDA, two meds there and then they start the third and I go home on a pump. I do that for 3 days. Then I go back to MDA every MWF for blood work and transfusions if needed.

Interesting to note, my doc doesn't believe in the neutrapenic diet, so other than washing fruits really well, I haven't changed my diet. Even during WBC .1 counts. I've heard so much talk about it that I did confirm with him a couple of times. I just find this weird. (And word some) When I move to the SCT doc, things will prob be different I imagine.

Lora

My son's doc is the same, but my son has started cooking his meat to well done (and hates it) and is not really eating much fresh fruit or vegies.

His consolidation was 5 days in the hospital with chemo drip for 3 hours, then one 12 hours later, then nothing for 24 hours, then start the process again until he has basically had 3 days of chemo.

When the chemo is done after the 3rd day they send him home, he goes back the next day for a neulasta injection and then does daily labs and gets transfusions when necessary before reporting to work at the hospital.

Lora,

Sorry to hear that you are a now a member of this illustrious club. I was diagnosed at age 58 and in September, I will be 3 years post transplant. I went through a terrible first induction (yes, first, because it failed), but the rest of my treatments were much less problematic.

I have done well throughout my post-transplant period, except for influenza A earlier this year and now a bad round of shingles. These are not expected complications, but neither are they rare.

It sounds as if you have many donors to choose from. I had 3, and received my marrow from a 34 year old in Germany.

I am back to eating whatever I want. At first, I followed the low microbial diet. Now I eat sushi (although my doctor might not be happy about that). Until I got the shingles, I was back at the gym.

Lora, your life will return to normal. Just get through the current process, and I promise that you will once again enjoy your life.

Cliff

Lora
My name is Lea. I'm sorry for your dx. My hubby Tony (41 yrs old) is currently day +14 from an Allo-mud stem cell transplant. He's in second complete remission (orig dx February 2013, favorable type /low risk AML inversion 16, remission after induction, unfortunately relapsed April 10 2014, cr2 may 28th, SCT July 10). Also where we are, they do T Cell depleted SCTs and patients have much lower risks of GvHD. And it's a major research hospital so were signed up for a bunch of studies.

Relapse was much more difficult (mentally and emotionally) for us than original dx. Mostly bc we knew how much we would be apart from our 2year old lil girl (and also our dog). We too have been advised to live close by for the first few months, as we live lil over hour away now. So we're staying at a friends condo in the city, Isabella will be able to visit us as soon as Tonys feeling well enough, and has his energy back. They are talking about letting him out tomorrow,
His WBC as of yesterday is currently 2.1, 1.7 ANC and plates 37, reds9.5. Only had one red transfusion and one platelet bag through the whole time inpatient. We walk 3miles per day, there's an except size room here too, w a treadmill bc the halls get a lil crowded too.
Best advise I can give is 1. Stay fit and active after chemo & before transplant. We had 4 weeks out if the hospital in between and tony acted like he was training for a sporting event. 2. Eat well(his docs don't worry about any foods but raw cauliflower and broccoli, and fruits w external seeds/berries) as long as you wash them well or cook veggies and clean the fruits, the benefits out weigh the risks! Tony also drinks protein shakes when you're recovering from a stem cell transplant is important to have the proper amino acids in attrition and your body to regenerate the new cells and that's a protein is the building block of. Also, yogurt and fruit Smoothies currently are his friend. 3. Last, do NOT google this disease or stats. They do nothing but cause worry and sleepless nights, and are not good for healing. You must stay positive. Meditate and picture life w your boys after all of this, that's been helping us.

finding this site and all of you has helped me so much, I know it will help you. My only regret is not finding DS until he relapsed.
Best of luck, I'll be following you!
Lea

Thank you guys for the support and advice. Lea your tips are great. I'll try to kick the activity into gear. Unfortunately I wasn't very active before this happened. I live in Houston and its disgustingly hot right now so walks sound ick to me.

Anyway, I had a possible reaction to a transfusion on Wed and developed a fever of 102.8 so they admitted me into the hospital. They can't find anything wrong, my fever went away by midnight Wed, but they are keeping me on IV antibiotics and say the earliest I can go home is Sunday. I'm kinda annoyed by that because I feel fine.

Lea I'm following your husband's recovery. He is so inspiring. Thanks again for the message.

Lora

Lora

My son also spikes a fever when he gets transfusions and has had to be hospitalized for a few days each time just to make sure there is no infection.

Karen