Aussimum,

Now your are getting into the rhythm of all of this. One good thing at a time. One foot in front of the other. Your Mum seems to be going in the right direction and we cannot ask more of her or her doctors. My prayers are with you. Give your Mum an extra squeeze for me. Your love is worth its weight in gold (or chemo).

Cliff

Hello everyone,
I have not posted in a while because everything was going so well and David and I were thrilled to be home. It was so encouraging to see him getting stronger and stronger every day after his first induction. He was filled with energy, like a new man! We were scheduled to begin his first consolidation this Monday when, all of a sudden, after 11 days, his fever spiked and we landed back in the hospital. His white count shot up to 26. The doctors think that it is either C Diff or an infection in his bowel from a previous infection. We were told that it's a minor speed bump but we are both so discouraged. I know from reading everyone's posts, that this is par for the course, but it's so hard to keep positive when these setbacks occur.

Thanks for letting me vent and my prayers are with everyone on the site.

Myra

Myra,

I presume that David must have bowel symptoms in addition to his fever for his doctors to think that he has C. diff or some type of bowel infection. It is good, however, that he was able to mount an excellent WBC response to the infection. I am sure he will get over this speed bump. Let us know what is going on as soon as you have more information. I will be thinking of you and David.

Cliff

You are the best, Cliff! Yes, he started with constipation which quickly turned to repeated bouts of diarrhea. They tested for C. diff yesterday and is scheduled to have a CAT scan of of the bowel/abdomen this afternoon. I will keep you posted and appreciate your wisdom.

Myra

Myra,

Not to interfere, but see if they can give you the C. diff result first, before sending him to CT scan. The new assays for two C. diff toxins are fast. I would hate to see him get scanned if the stool is positive for C. diff. Let's not give David more than one diagnosis for the diarrhea. I had so many scans and then radiation, that I probably glow in the dark. Maybe that's why my wife says I am " the light of [her] life."

Cliff

You are right on target, as usual, Cliff. They said that it was C diff and didn't do the CT scan. They did say, however, that if his fever doesn't come down by tomorrow, they may consider the scan. We pushed for him not to have it because he has not been eating a great deal and with all of the meds, he has had a very unsettled stomach, even with the anti-nausea meds. Drinking the contrast would be difficult for him.

And, by the way, your wife is so fortunate that you light up her life. You are wonderful!!

Myra

My pleasure Myra. My guess is that his symptoms will resolve quickly and hope that they don't push for a scan. It will be superfluous at this point, EVEN if David is still febrile tomorrow. I mean he is damn sick and things don't always get better over night, although they might! I presume he is on Vancomycin. That is the gold standard. If his clinical situation were different (i.e., no AML), I might have gone with Metronidazole, which is not as good, but gives equal coverage whether given orally or IV. So now David joins Phil's C. diff club. I certainly understand why our doctors use antibiotics so freely when our defenses are down, but C. diff. is a casualty of the antibiotic administration. It just leads to overgrowth of that annoying bug. The good thing is that the bowel will heal completely.

Myra, that is a very good point about the contrast. I had several CT scans when my bowel was horrendous and my C. diff was negative. Drinking that nauseating liquid for me was truly mind over matter. I would rather get a bone marrow biopsy. It is a huge volume (because they have to give enough to opacify the colon and that is a far distance from the mouth!!!! It has a bad taste and UGH...I think I am getting nauseated reminiscing.

As I always say (just with different names!), please give David a real. big squeeze. He has more than enough WBCs and he risks nothing by getting a hug. Hugs do not have to be given IV.and I think they are on the hospital formulary.

Love to both of you. I am glad you hit a speed bump. It just puts everything into perspective. And, although I have quoted my AML mentor, Dave Chung, who breathed hope into me and my wife when we met this 14 year survivor..."Don't sweat the little things, because they are all little things." I keep saying that to myself as I cough myself silly....and I think of Dave on Waikiki beach (with sunscreen on of course) thinking, "Life is good."

I, and I am sure you and David and everyone on this site would say, "LIFE ISN"T GOOD, IT'S GREAT!!!!

Love,

Cliff (and, I am quite certain, the rest of the motley crew of AML survivors)

Cliff,
He is on vancomycin in the liquid form. He is having some difficulty tolerating it but the ID doctor is reluctant to change it because it is working. David says that he will 'soldier on' since his fever has broken and his diarrhea has abated.

Cliff, having an "on call" doctor on this site is an unbelieveable blessing. The fact that you provide all of us with such invaulable information is priceless. I can't begin to thank you enough for all that you are doing for all of us.

May God continue to provide you with many blessings.

Myra

Myra,

I am so glad that David is responding. Vancomycin is still the drug of choice. There are some newer effective agents, but why rock the boat? David has had an immediate response and should continue to get well. Then you both can put this behind you. As long as he makes continued progress, I would expect him to be "sprung from the joint" in a few days. There is nothing like avoiding those continuous vital sign checks in the middle of the night.

He should slowly try to get back to eating. C diff involves predominantly the colon, so he should be about to digest and absorb nutrients without difficulty.

I really appreciate the title of "on call doctor." That's how I was hoping others on this site would see me. I check the site periodically during the day to see if there is anything I can do to ease some of the tremendous anxiety that having and treating this disease brings with it. (If you think that I don't worry about myself at times, I do. Fear is natural when you do not feel in real control of any of this). I just don't want to see anyone panic, because that emotion is never close behind even though patients and their loved ones know that they have to expect the unexpected. I truly appreciate your keeping us all informed about David. Although it may not be obvious, hearing that someone else is managing those moguls on the giant slalom is music to the ears of the rest of us who are inching our way down the slope, some a bit ahead and some behind David. (I just conjured the image of all of us creeping down mountain in a line....LOL.). When we get to the bottom, we can all throw caution to the wind and tuck those poles under our arms and just feel the exhilaration of a trip that was well worth the risks taken.

Cliff

Dear all,
I just want to say hello. My name is Tina.
I have just signed up on this site and joined AML Support Group. My father has recently been diagnosed with AML.
He is 73yr old, the doctor in Australia where he currently lives does not recommend chemotheraphy for him. He is otherwise a healthy person with many interests, so it is really devastating that the doctor can't do anything for him anymore.
We have been told of Dendritic Cell and Cytokine-Induced-Killer cells immune therapy in a hospital in Germany and we are getting ready to fly there soon as his platelets count is dropping quite fast.

My sister has been diligently looking for information on internet and changed upon this support group. We were encouraged by some of the information and information that we read.

I just want to thank all of you for creating this group and being very forthcoming with the information.

-Regards, Tina-

Hi, Tina -

I know some of your worry, as my Dad is sick with AML as well. The stress of this can really be overwhelming at times. I am very glad to know that you are looking into getting the input of some other doctors; it shocks me to think that you'd have to go as far as Germany to get it, however! Have your doctors given you any further explanation as to why they think they can do so little for him? I will be thinking of you and your family - it is not an easy road we are on, but the support of friends and family will help a great deal. Let us know if we can help.

Robin

Dear Tina,

Good luck!
I know that in Germany they have really advanced therapies (Robin - people often go to Germany since they allow for experimental therapist earlier than most countries and are more flexible about it, from my understanding).

I know of at least one person to whom a doctor told they don't recommend chemo due to their age, they went to second opinion and insisted and got chemo, which in at least one case resulted in four years of remission and good quality of life.

AML is a very aggressive disease and there are different approaches as to treatment after the age of 60 or 70. The simple reason is that the chemo is extremely aggressive and the risk is very big and grows with age. However, if your dad is otherwise healthy, I personally would do as you are doing, and wouldn't give up, if he's willing and interested in fighting this beast.

Wishing him health,
Abby

Tina:

I was 64 when first getting into chemo -- am now 69 -- a 3.5 year survivor. But whoever you medical team is or will be, it will be up to them to help you make the decision. And I guess if they just refuse because they think it is too dangerous, there is not much you can do along those lines.

But -- there is an Alternative Treatments thread on this forum. If you go up to the left column near the top you will see a button named Acute Myelogenous Leukemia -- click on it and you will see the entire lists of threads. The Alternative Treatments is near the top because I just posted something to it to get it there. It is a LOT of reading, but in my opinion the best advice seems to be related to osteo-K. If all other treatments are ruled out for whatever reason (as they were for Heather's dad), I would for sure give this a try. Many oncologists will work with you on such alternatives to continue to take blood tests and to balance out what might be any negative side effects. Please feel free to post to this thread and ask Heather any questions you might have -- she is just one great person. Also, take a look at the YouTube URLs -- very interesting and quite informative. We are praying for you and your dad -- dave

Dear Robin, Abby, and Dave, thank you so much for your words of encouragement.
My father was found to have decreasing level of platelets count about 3 years ago. At one point, it was dangerously low that he started to have bleeding on gum, scalp. It is myelodysplastic syndrome (MDS). He was fortunate to be accepted in a trial in Australia that uses a drug called Azacitidine with mild chemotherapy. It looks promising and he was back to his old self until a few months ago when they noticed the platelets count dropped again. Because it turned into AML while undergoing chemo, the doctor thinks further chemotherapy will not help. So he is basically left on his own, which is very devastating for all of us.
My sister put him on Budwig's diet but the platelets count has dropped further. We are hopeful that the therapy in Germany can help.

Dave, my sister came across Heather's post. That's what bring me here. She has been reading it and trying to find the suplements in Australia.


Thank you all once again, Robin, Abby, and Dave. Reading the testimonies bring some comfort to my mind.
-Tina-

Tina -- I am glad you are researching osteo-K ... if I were to relapse and they would not offer me any other options, I would sure take this one. At this point I do not see any good reason to take it since my blasts are behaving themselves quite well, and my onc does not want me to start experimenting with things. Chemo could have done some hidden damage and any overload in anything could cause some issues. But if blasts are a problem it appears that in some people the osteo-K can help. See if you can locate any trials that were done in Japan. Take care and we will continue to pray for your dad -- dave