Should have said "transplants from unrelated donors"

Chemo brain

Hi Myra -
Welcome. I am very sorry to hear about your husband's diagnosis. My father was also 67 when diagnosed last year. I know exactly what you are feeling and I wish I could give you a big hug right now. The people on this site are absolutely wonderful. They aren't just people - I consider them friends. They have helped me and many others through some dark days. Come here if you need to talk or vent anytime - I think you'll find it to be very therapeutic and extremely supportive. I can't thank my friends enough. As for you and your husband - just be there for him as much as you can. Think good thoughts and try to take care of yourself. I am thinking of and praying for you and your husband. Everything is going to be alright. xo

Thank you for welcoming me to your group. It's comforting to speak with those who are wise and have had shared experiences. I feel very low at this point and your encouraging words have been helpful.
Myra

Hi Myra,
I am so sorry your husband is going through this, as well as you and your family. AML treatment is fast and furious and it is hard to understand all the jargon thrown at you. To suddenly going from a routine blood test to you have Leukemia is frightening. I was diagnosed in Nov 2011 and first was treated with "chemo" only, I was in remission until Oct 2012. I then had to "rinse, repeat" and then go in for a transplant. I thank God that my second induction also put me into complete remission and I then had a transplant Jan 22.

For me gathering information from my MD's, RN's, and Heme/Onc Clinical Nursing Specialist helped lessen the fear. I would keep a notebook at my bedside and write down any question that suddenly popped into my mind. The list helped keep me focused when the MD's came into see me. The Heme/Onc Clinical Nurse Specialist helped me a ton, if I suddenly had a burning question or was anxious about something she was usually available to sit down and talk and explain things. I think for me the fear of the unknown was the worst and still is. The Leukemia and Lymphoma society has a program that can put in touch with someone who has been is a similar situation. I talked with a woman who was several years out and it helped a lot. It is called "First Connection Program".

I will keep your husband and you in my prayers. You and your husband are not alone in this fight, stay determined.

Take Care,
Suzanne

Myra,

We are all here for you. Cliff had an unrelated transplant and I am sure will be commenting soon. As did others. I used to use the term "life turns on a dime' but never knew what it really meant till I went from a head cold I couldn't shake to 41 days in the same hospital room through induction. Be good to yourself. Be patient with the process and lean on us when you have a question you need answered. The Dr's are usually amazing, but sometimes I found it was nice to talk to a community of people who knew exactly what I was going through.

Ed

Myra,

It is so ironic that many of us were diagnosed when we were enjoying a symptom free life. For me, like your husband, my diagnosis came as a surreal shock and now, almost two years since my diagnosis, I sometimes still cannot believe that all of this has happened.

I have two siblings, but as Eddie intimated, there was no match there and I needed an unrelated matched donor. I was in the intermediate category for recurrence with chemo alone, and so I went for transplant. I use the word "went" lightly, because I really made no decisions regarding my care. I just did as I was told to do. Although I am a physician, I read virtually nothing. Looking at statistics and medication side effects serves no purpose but to make you anxious.

The treatments are truly a test of one's mettle. I was very sick during my first induction (which was not quite successful). Very sick. However, I made it through and the remainder of the treatments, which included: another induction, consolidation, radiation, conditioning and transplant.each had its own associated torture, but by the time you are mid-way through, surrounded by people who love you (as you clearly do your husband), you are determined to get well again...and I have.

I had 4 potential donors and got what is called a T-cell depleted transplant from an angel in Germany. I have now survived 18 months and feel well. I am on only two medications related to my condition. The rest are for the medical conditions that predated my AML. This whole thing is doable. Do not be frightened. Instead, be tough and resolved. I sang my way through my treatments, I nearly ran through the halls when I was allowed to go out of my room.

Myra...where is your husband getting his care?

I don't think you have to be told that you will find a great deal of love on this site. It is genuine. We are here for the both of you EVERY STEP OF THE WAY. There will be days when you will be anxious or depressed. That is natural and normal. We are not a bunch of Pollyannas who will sugar-coat a very bad experience with a bunch of platitudes. We are realists who have survived. We are the "energizer bunnies" and the "Timex watches." We keep moving forward to good health, sometimes in leaps and sometimes in inches. Nevertheless, we know, that despite all of the trials and tribulations that AML therapy brings with it, your husband will prevail as we did, and this nightmare will fade into the background of a rebirth.

Cliff

Hi Myra,
I know we are all here for you. It is shattering for you and David to be facing this diagnosis of aml.
As We sat here, reading your post, we have tears in our eyes, just knowing how you feel right now.
My husband Ben and I faced the same thing in January 2012. Ben is now 64 yrs. old. Now, just over a year later, after 2 inductions, 2 consolidations and a transplant (unrelated 10/10 match, It seems like we are coming out of the tunnel. It is not going to be easy for David and for you,as his main caregiver but you will get through this,, one day at a time.
This group will be here for you through thick and through thin.
Don;t hestitate to reach out I believe this is a group of people that God brought together.
We are thinking of you and David and praying for you both.
Love,
Sandra and Ben

I am so overwhelmed by your warm responses, I truly feel that this is the first time since this nightmare began 2 weeks ago that I actually believe that we have a chance. We are being treated at The Cancer Institute at Robert Wood Johnson Hospital in New Jersey. We really didn't have an opportunity to do due diligence in seeking out the best hospital for treatment because we were told to "run, don't walk". So far, we have been pleased with the doctors and overall staff and were told that we could get a second opinion after the treatments.

My husband has always been in excellent health and takes only one med for high cholesterol. I am praying that this will be in his favor as we move forward.

One thing that I have learned from this brief two week ordeal is how much we are loved by our family and friends. The outpouring of support has been nearly overwhelming. It's unfortunate that we have to have a crisis in our lives to express our feelings to those we love.

I feel that I have a new set of supporters who are willing and eager to hold our hands during this journey. Thank you in advance for your prayers and encouragement.

Myra and David

Myra and David,

Of course good health preceding this diagnosis will go far in David's ability to tolerate and bounce back from the treatments he will be getting. Robert Wood Johnson is a fine place and he will get great care. It is funny that you used the phrase "run, don't walk" to describe the frenzy that we all go through when first hearing about our diagnoses. No one, at least no one with human emotions, can truly comprehend the horror of all of that, without having gone through that trauma. I am praying that that day will be the worst that David ever has as he moves through his course of treatment and inches closer and closer to great health. I am so glad that you sense the genuine love here. I remain overwhelmed and only wish that I had "met" all of these wonderful souls BEFORE I started on the road out of AML-land and into the bright sunlight of wellness.

Lots of love your way,

Cliff

Myra and David,
We are all intimately aware of your emotions. My position from Day one was that I could handle this and I would rather it be me than someone I love battle AML. My mantra has been to beat this, go at it with all I have. I believe every life experience I have had and experienced was a precursor to the strength I would draw from. I created vision boards, my Facebook page says"mission: possible". I downloaded music to inspire me, toughen me and then to sooth me. I have been renewed and refreshed in my faith.
I will tell you to .lean on family and friends. They will want to help, but also will not know what to do. Have them run your errands, cook a meal, clean.
You have now entered a world of the "NEW" normal. I will not say its easy, but do not fear it. We are soldiers in this battle. I am a 48 year old , who was very healthy and far too busy to have a cold, let alone AML. Well, it appears, I was mistaken and my life path was not what I thought was necessary. This journey has changed my family (for the better). We are a stronger unit.

Please ask a million questions. Give yourself permission to be sad, angry and confused. We will be here for you. I will add you to my payer list immediately and pray for the match. One of my other songs from Fiddler on the Roof. Hang in there. We are with you.
Peace, love and hope always and forever,
Andrea

Dear friends,
Many of our friends, family members and co-workers have rushed to our side since this frightful journey began offering support and encouragement; however, they have (fortunately) never walked in these shoes and cannot fully comprehend the depth of our anxiety. I have read and reread the replies to my posting and they have offered us an enormous amount of hope. You have lifted our spirits in a way that no one else can. It's so strange how our lives can change so dramatically from one day to the next. Prior to yesterday's posting, I never joined a support group or posted anything on the Internet. I thank you all for holding our hands and guiding us through these rough waters. God bless you.
Myra and David

My partner Bob was DX with CMML in November 2011 and in March 2012 was told it had turned nasty and was now AML. He had four induction rounds of chemo during 2012, first round was OK, but subsequent rounds he suffered terrible affects, i.e, septicaemia, brain abscess, etc. etc. Sadly, having been through all this the chemo hadn't worked and he was told in November there was nothing more that could be done. Unable to accept this he found a trial in Manchester (UK) and went through induction in December 2012. Again, this did not work and he was told in January 2013 to go home and put his affairs in order. Since this time he has been receiving blood transfusions and platelets as a day patient. He has also been taking 2000 mgs of HydroxyCarbamide per day to try and keep his WBC and Blast count down. He was taking Dandelion Root Powder (they are doing clinical trials with this in Canada) but was advised against taking it with the chemo tablets.
On 26th of February this year Bob started taking Chinese Herbs prescribed for him by the Assante Clinic in London. It has only been two weeks since he began taking them but his colour has improved dramatically. Whereas before he was white and pasty looking he now has rosy cheeks. Also, since taking them Bob has not needed blood transfusions. The Professor who prescribed them said it will take about four weeks before we see any real benefit - so we are hopeful. He also eats an 85grm portion of watercress per day as I read online that this could be helpful.

We ordered Osteo-K having read about Heather's father and he is due to start taking it today. We have the D3 and Curcumin too.

Bob's blood counts today are:

WBC 71.8
RBC 3.25
HB 9.2
Platelets: 30

His blast count on 11/03/2013 was 63%.

Bob is currently visiting hospital twice per week, Monday and Thursday, for Blood tests. Today was a good day as he needed neither Blood or platelet transfusions. I will post his results on here as when I get them.

Bob feels OK in himself and is managing to get up and about. His appetite is good.and mentally he is very, very strong.

Kindest regards to all,

Anne D. "

Anne and Bob,
I am sorry about your situation right now. It seems like Bob is not willing to stop this battle for his life. Thank God!
Where are you located? Do you both think everything possible has been done for Bob? How is he physicall? I mean are his main organs still in decent shape?
There are so many questions to ask you. I know there are people who have been through 6 rounds of Chemo (like Dave) and have been told the same thing. They or their loved ones never gave up trying to find an answer.
I am thankful, Bob has you as his caregiver to do all the work and research necessary to keep on fighting this battle.
i have hope for Bob,
Love, hope peace and grace tp you both,
Sandra

Hi everyone. I'm new on here. I started a post on clinical trials, but thought I'd re-post it here as well.

I'm hoping that some of you may have had some success stories of going into remission through a clinical trial. I'm reaching out for some support regarding my dad.

My dad is 69 years old. He was diagnosed with MDS at the age of 68 in May 2012. At that point his blasts were at 12%. He did 5 cycles of vidaza which unfortunately didn't help him and by December his MDS had become AML with 38% blasts.

Due to his age, doctors felt that induction chemo would be too aggressive and could do more harm than good with serious side-effects that would make him even sicker and with no guarantee of remission.

We opted to go the clinical trial route with a low-dose chemo (cytarabine) and a new study drug. Just before he started the trial in January, he started feeling a little sick experiencing some headaches, nausea, upset stomach and fatigue. Because he had experienced similar symptoms off and on since his diagnosis, we figured it wasn't anything serious so he started the trial in early February. He did a 10 day course of cytarabine and the study drug. About a week into it, he got really sick with severe headaches, stomach pain and shortness of breath, fever and fast heart rate. He did scans and ultrasounds and everything came back clear. He just had a very bad sinus infection and flu which they've been treating. He's been in the hospital since and has been doing much better until today when he got a mild case of pneumonia. The good news is that they caught it early and he should be better over the next couple of days.

He did a bone marrow biopsy last week and today we were told the trial didn't work. We're devastated even though we knew there was no guarantee it would work. The doctor said there are many other trials he can try and we're trying to stay positive, but it's difficult not to think of the worst.

Can anyone offer some advice or their experience with a trial that led to remission? We need as much positive feedback and hope that we can get to help my dad through this.

I was wondering if someone could address the psychological toll of this illness. Specifically, were any of you as patients or your caregivers given anti depressants or anti anxiety meds? As David's caregiver, I lovingly spend 24/7 with him at the hospital. How did you deal with the long hours and the feeling of claustrophobia? This is all so new to us. I sincerely appreciate your feedback.

Myra and David