Myra

I am thinking of you and David. Long hospital stays are not much fun but take comfort in that it is the best place to be taken care of. I'm glad he has a transplant, it is much easier to work with a plan, it should also give him some time to recover and rebuild some strength.

Wishing David many healthy new blood cells - the sooner the better!!

Nicole

**that should read transplant date***

Hello, everyone. I am new to this group and have read quite a lot of the threads, but of course only the recent ones. I have some questions that maybe some of you could help with.
Quick background: I am 67, female, diagnosed with AML in early March '13. Induction chemo was very rough in all the expected ways but also because I developed hand/foot syndrome (from a clinical trial drug which they stopped once the symptoms appeared). This kept me bedridden for nearly two months during which I lost a lot of strength and have had a pretty heavy dose of physical therapy. I am, however, in remission and have completed my first round of "consolidation" chemo. I seem to have two symptoms or side effects that I don't see many people discussing so I thought I might bring them up and see whether anyone else has them:
: first, a more or less 24/7 experience of either hot flashes (full body, not the menopausal ones) or feeling very cold. Cold follows hot. My temperature is virtually always normal during all these, but I am having a terrible time trying to regulate my environment.
And second: a lot of fairly severe shortness of breath, especially since the last brief hospitalization for spiking a fever (E. coli infection). I can barely walk from the living room to the bathroom (maybe 30 paces) without having to sit down and rest to catch my breath. All the usual suspects (COPD, pulmonary embolism, heart problems) have been ruled out. My oxygen saturation is always in the high 90's. My blood pressure is a little low, but not abnormally so. My blood counts are not yet normal but they are getting there. Has anyone else had this? Does anyone have an idea of what could cause it?
I will ask other questions later. Everyone here seems so helpful and even if you cannot answer my questions, I am very pleased that I have found you.

Shoshone,
I am on a drug now that has given me the hand and foot syndrome, though luckily not so severe stage 1. I have one pair of flip flops that are like walking on a cloud and it helps. Under Armour makes them and they are literally cloud like, no blisters at all, but peeling skin and major heat sensitivity.

I have also had and have the hot and cold flashes. I agree it is different than the peri menopausal or menopause symptoms, but I was pushed to that very quickly when diagnosed so this seems better than what I went through a year ago. I just chalk it up to hormonal issues. I take daily hormone pills. I no longer get night sweats, but the hot followed by cold is irritating when trying to sleep, I also will get it during the day. Again, I thought it was a me issue, but now that you mention it too, I will ask my doc about it this week. I have become so accustomed to them telling me it's a side effect of meds that I just accept all weird symptoms as such or my favorite thing to blame is from my radiation treatment back in December. I blame that for everything.
For me, shortness of breath has always been a direct result of low hemoglobin and usually means I need to be transfused. On e I blew it off as being out of shape, but I was quickly corrected and told it means I should make a phone call. That said, a few weeks ago, I had a bout of shortness of breath for no clear it reason and my counts were fine, so go figure.

I am not sure I added value to your questions here, but it gave me pause when I realized I have had similar symptoms. This AML certainly wreaks havoc.

Feel better. I hope someone can offer better advice.
Peace, love and hope always,
Andrea

Shoshone

It seems my thermostat is broken. I will go from hot and sweaty to cold in a matter of minutes. It does not feel like menopause. I went through that one already. It has been a year in August since my last chemo. I am not on a lot of meds. So I am guessing it must be hormonal.

I went through a lot of what you are talking about. Normal blood pressure, normal temp, etc. I think it was just my body trying to recover from all the battering it was taking. I am much, much better now. So I am guessing a lot of what you are experiencing will pass. In the meantime it can be maddening.
Be blessed,

lily

Myra - I am so happy for you and David to know that his SCT has been booked - now we are getting somewhere! ; ) In a happy coincidence, not long after reading your post I received an email from the Be the Match folks that my donor kit has been processed. I decided that this is a sign from the universe that your David is going to do just fine! I know that these next several weeks in the hospital won't be easy for either of you, but I do hope it brings you both great relief to know that this next, most exciting phase of his recovery to good health is within sight! Please keep us posted and let us know if you need our support.

Tina - thanks so much for the update as to Jay's progress. Those mouth sores sound brutal - I hope that they are able to relieve Jay's pain and discomfort. I am sure that it is very hard for you (much less your daughter!) to see him dealing with that. Please do let us know how things are going when you are able to.

Love,
Robin

Shoshone -

Just wanted to welcome you to the community. I was sure that it wouldn't take any time at all for someone to jump in with an offer as to their own experience of those symptoms. Please know that just the fact the you raised the topic will be sure to bring some comfort to someone else with the same question! Anyway, I do want to wish you the very best as you recover your own good health.

Robin

Shoshone -- please be sure that it is not a fever -- even perhaps a very slight one. Typically your body in fighting an infection will tell you it is cold so that you will get the chills, shiver and run your temperature up -- the body's way of trying to kill the infection. At that point you overheat, and get the chills from sweating and evaporation, and then the cycle repeats itself. This is probably nothing to be too concerned with if your temperature is not going over that critical point that they told you about -- 100.5??? I think that was it for me -- I had to go back to the hospital if it was above that for more than a couple hours. Don't fool with it -- if it is a fever then you need to get back in and get some antibiotics ... your body is in no condition now to fight it naturally.

The other thing I had as well -- not being able to do much at all ... getting fatigued almost immediately. I think this is just a side effect of the chemo on your various body organs -- it affects them all. Fortunately, it should go away once your numbers come back up, so don't be too concerned about it -- it is just something you have to get through.

On the other hand, be VERY careful getting up and moving around -- I blacked out once and did not know it until my head hit the concrete floor. Not good. Don't take any chances -- crawl around if you have to, but if you are feeling light headed do not take a chance on it. Get down or sit down. I was only walking from the dining room chair to my other chair and it got me. My problem was caused by afibs and low blood pressure. Keep an eye on your blood pressure especially if it is dropping at times. Again, I know you will get over this, but right now you have to survive it -- so watch out for a fever and protect yourself from falling. Take care -- dave

Hello all! I am new to this site although I have been a lurker for a few weeks. I have been blessed to be in e-mail contact with Dave for a few months. I am here because of his encouragement.

On March 22nd 2013 (5 days after my 48th birthday) I was diagnosed with Acute Myeloid Leukemia (AML). It came as a complete shock as I had no symptoms and felt great. I am praising God for several miracles associated with my fight against this heinous disease; my disease was caught early, I live near a center of excellence that focuses on Adult
Acute Leukemia in the Western US (LDS hospital), Cytogenetic testing revealed I have a form of AML considered favorable to chemo only vice a BMT (Inverse 16 with a negative FLT3 and C-kit),and I have an uber supportive family (I am the mother of three glorious daughters ages 12, 10 and 8) church, neighborhood and Air Force family (my husband is retired AF and I have worked for the AF for 25 years)

Having said all that, I am at a crossroad in my consolidation treatment and would love to hear your perspectives. My induction went fairly smooth. Ironically enough, I had weight loss surgery in Oct which caused the Doctors some concerns as the procedure I had is somewhat new (duodenal switch). The AML was diagnosed because I was having routine CBC done which alerted the surgeons nurse who BTW also works on the Acute Leukemia floor on Saturdays (one of God's many miracles) During induction, I did need a feeding tube due to mouth sores. Other than that fairly smooth 28 day process.

The doctors informed me that with four consolidation treatments of high dose Ari-C I had a 70% probability of cure. Of course, I was over joyed! Prior to consolidation, my fourth BMB showed no cancer. I started my first consolidation on 30 April receiving six bags over five nights. I had no adverse reactions other than very slight nausea.

I have been home since May 5th, almost 60 days! I have had a very uneventful nadir except the fact that my blood counts are not recovering as fast as expected. I have needed a few bags of platelets and red blood. I gave myself the nuepagon shots with no real issues. Two weeks ago, the main ONC- Finn Peterson had a precautionary BMB done just to be sure. Praise God no cancer! He explained that the chemo dose my be too high for my body. Currently (last week) my counts are as follows: WBC 3.4 Nuet 2.2 HCT 30.9 Platelets 76. The platelets are stopping from getting chemo-they have to be 100 or above.

I am scheduled tomorrow at 2 pm to try again. I am praying for platelets. My question is have any of you heard of 60 days between sessions or lower doses of chemo not affecting the remission outcome?

I am trying to be patient and trust God but of course I put my recovery on a schedule-silly me. The Air Force has allowed me to work from home which I do four to six hours per day. I walk 2 to 3 miles per day with my daughters and talk about God's love, grace and mercy! I feel healthier than I did before diagnosis-this disease is so strange.

I am so sorry for the long post. Thank you in advance for your time and attention.

God Bless
Julie

Well, Julie I'm sorry to hear of your diagnosis but happy for your extraordinary cytogenics. I;m not a chemo only type as I had an allo transplant, but did have one round of consolidation chemo to bridge me to transplant. As I look at your numbers they're a little lower than the normal range but I've seen (and I've had) much worse. Platelets always seem to be the problem, even for my mother when she was undergoing chemo.

There are a couple of chemo only people on this board, Dave and Lily and I think Steve too. They can give you better info. But as I remember even when I was getting ready for BMT which was around 6-8 weeks after my consolidation round my counts were probably not much better than yours.

I know I didn't give you a wealth of info but I hope some of the others jump in with better answers. Good luck.

Hi Julie!
Congrats on your awesome news. I love when they say, your marrow is clean and there is no evidence of disease! What a great feeling.
Wow, I look at your counts and say treat looks awesome! Perspective I guess. I am 5 months post transplant, it because of flt3 , I am getting chemo still and i hibitors that blth lower counts. It takes me forever to get my counts up. I had a bad reaction to neupogen and no one wants to take the risk, though chances are I'd be fine(not a gambler). So, at 6 weeks post my last chemo, my numbers are still much lower than yours. I pay closer attention to my ANC(neutrophils) so I gauge risks of going out. I am one of those people that always has a mask handy as well as gloves, just in case.
Welcome to our board. Peace, love and hope,
Andrea

Julie -- not problem with the long post -- it is good to get up to date ... I needed a review ... chemo brain ;o) Take care and good luck tomorrow -- we will be praying for you -- dave

Hi Julie, Welcome to the site. I am happy that you decided to share your story with us. I love hearing about other "chemo only" survivors. And surviving induction does make you a survivor. You are so fortunate to have come through that so well. My induction wasn't so easy. But anyway, I am a chemo only AML survivor. I have been in remission for over a year now. Still trying to get my cell counts up. My onc said they may never be normal again, but I can live with it. The magic words, "I can LIVE with it". So I am careful and go about my life mostly as usual. It has become normal for me. They were going to do four consolidations but decided to stop at three. My cell counts just were not recovering. So far so good. I was prety nervous about not getting the transplant or the fourth consolidation. Just the fear of relapse. But seeing others, like Dave, staying in remission has been a tremendous encouragement.

I also have been told I have a 70% chance of a cure. I feel so grateful and fortuate. My life has changed so much since my diagnosis. I would have to say I love the change in myself. Just being alive to enjoy my family and pets is enough. I have learned to love myself warts and all. That wasn't so before AML.
i am not saying I am happy that I got AMl, just looking for the silver lining as much as possible.

Unlike you, I knew somehthing was very wrong with me. I went to the ER with a temp and feeling the worse I have ever felt. I was life flighted to Portland and the induction was started the next say. So I would say we all seem to have our individual experiences with it.
I am off now to my every other week lab draw. Always nervous!
Glad you are here Julie, hope to hear more from you.

Many blessings to you and yours,

lily

My doctor says that 3-5 rounds of consolidation are ideal but there isn't any proof that 4 is better than 3.

That is what my docs said as well. There is no proof that four is better than three. So, I certainly was happy to forgo the 4th!

lily