Hi everyone! I'm happy to report that things are getting a lot better as far as my mouth sores/throat. I'm able to eat a lot more food but things still don't taste like they should (but as long as I can eat different things I'm not going to complain).

On the other hand the Revlimid did not work in lowering my white count. In fact, it shot up to 30! (normal is 3.2 - 9.8). So this must not be the drug for me. Dr. Rizzieri put me back on Hydrea hoping to get this count down again. Like I said in my last post there is a drug he wants to put me on which is similar to the STA-9090 (a protein inhibitor) that I was on at the beginning of this year. However, it will require a weeks stay in the hospital. This doesn't totally depress me because I know all the nurses and like the 9200 unit but a week away from my bed is not appealing. It also makes it harder on Michael and Mom when I'm in the hospital. (I'm a very spoiled in that I do not like hospital food and so mom or Michael bring me my meals plus I still don't like staying there by myself at night.)

My only other problem right now is just being incredibly weak. My legs have very little strength and I am having trouble with balance when I walk. Mom and Michael make me hold on to them whenever we walk anywhere.

Hope you all have a wonderful week,

Amy

Hello Everyone! So I'm not really sure where I left off in updating you all so I will just start with this weekend. Saturday I woke up with chills/cold sweats/hot flashes and it was just a pretty awful day. I never had a fever but slept most of the day. The days since then have been much better. I'm still feeling extremely weak, especially in my legs. Going up the stairs is a challenge.

My white count has also started to climb this week so we are doubling the Revlimid and hoping it will do a better job, if not, Dr. Rizzieri has yet another drug in mind to start sometime in the next few weeks. After the mouth sore/mucousitis situation I'm going to really have to weigh the possible side effects vs. possible outcomes of these drugs. This new drug would also require about a weeks stay in the hospital. These are tough decisions that I need all of you to pray about. I trust God will lead me in the right direction.

Hope you all are having a good week,

Amy

Wow - I did not realize it had been so long since I posted a message. Sunday through Wednesday were good days; I felt like I was improving everyday. Thursday and Friday weren't so great. The coughing just pretty much took up my day which makes me achy and just feel yucky. I feel like I have three problems: mouth sores, throat irritation, and coughing/mucous. They tend to rotate as to which is worse at the moment. Right now the mouth sores are the worst, I've even felt a couple new ones pop up over the last couple of days. My appetite is dwindling so we're also having to watch my weight to make sure I don't lose too much weight.

They took me off of the Hydrea. The way I understand it is that the Hydrea works to cut down the number of white cells in the blood. Revlimid, on the other hand, tries to get the bone marrow to make good cells. So hopefully once the Revlimid gets in my system, it will help create some good white cells and clear up my mouth/throat. I had low grade fevers the first few days I was on Revlimid but those have gone away and they say this is not uncommon.

Hope you all have a good week,

Amy

Hi Everyone! It has not been the best week here in Durham. They say "two steps forward and one step back" and this week I've definitely taken a step back. I really cannot tell if my mouth is improving or not but the main nuisance has been the cough and mucous it brings up with it. My throat is just raw from this. They say my lungs sound clear and it's all in my lower throat, which is good. However, I have been running a low grade fever off and on. Hopefully this congestion stuff is nothing more than mucositis, if not they will have to put me on stronger antibiotics.

Now for the answer to the million dollar questions "are they here yet?" YES

The Revlimid came Thursday so I've had 3 doses of it so far and haven't noticed any side effects yet.

Thanks for all of prayers and support, Amy

One final note:

JMU 21 Virginia Tech 16 - I have never been more proud to be a JMU Duke!

It's been a good week here since I last updated. Things are improving just very, very slowly. My mouth sores/throat are improving. I even ate a grilled cheese yesterday! My biggest problem in the last few days is just all the fluids. I've had some sinus headaches (I assume that's what they are) because of this. We still have not received the Revlimid but we're told it should come in the mail sometime soon.

My next topic: David Richardson. He is my very entertaining cousin (2nd or 3rd or both, I don't know - the origins are West Virginia). I thought you all would enjoy this picture of him in Alaska:

So if you thought he was crazy before, you will really think he's crazy now. I have spoken to witnesses that this is not photoshopped, it's the real deal. (Sorry David - hope you don't mind my posting this pic)

Hope you all have a good labor day weekend,

Amy

Hello Everyone! I'm still on the IV antibiotic that I carry around and have only forgotten that I'm attached to it a few times. This means I have to go to clinic everyday for them to give me a new bag and reset the pump which doesn't take long. However, Tuesday I had a nosebleed and had to stay for platelets as well. They do blood work on Monday's, Wednesday's and Friday's so I almost always have to stick around for platelets and sometimes red blood cells.

As far as the mouth sores my mouth feels much better, but my tongue and throat are still causing problems. I still cannot talk and eating/drinking is pretty difficult but we're being creative and making it work. Banana popsicles are my life saver! I mentioned before that the mucositis also makes you produce lots of thick mucous and fluids in your throat/sinuses/chest so I'm still dealing with the cough and all the fluids I cough up (okay, I'm getting too gross I will not go into any more details). With my white count being so low they say this is just going to take a long time to heal. Like I said we're making it work with eating but I still have to worry about my weight dropping and have to try to get in as many calories as I can (never thought I would have to do that).

After all this complaining, I still think I feel good. I feel like going out and doing things. We went to the grocery store Monday and the mall Tuesday and those were the highlights of my day! Not being able to talk makes that complicated but I carry around my notepad to talk to mom and Michael. In addition, my legs are still very weak. Going up the stairs is a challenge, but I'm working on it. So overall, I think things are improving, just slowly.

As far as the new drug (Revlimid) we have a few more paperwork things to do and then they will mail it directly to me. So we're hoping to get it sometime next week. Since my white count is staying down they're not really worried about the delay in getting the drug.

Hope you all are having a good week,

Amy

Good news! I did get approval for the Revlimid from the drug company and insurance. It is a pill that will be shipped to me and we will hopefully get it sometime the beginning of next week (although it takes mail a long time to get here).

They also put me on IV antibiotics today to try to clear up my mouth/throat sores. I really haven't seen any improvement since my last post. I'm glad to be more proactive in trying to clear these things up. I have a little "take home" pump again that gives me the antibiotic 4 times a day through my central line. I just need to remember that I am attached to the pump! I've already forgotten once after only having it for about 3 hours.

Thanks for all of your prayers, cards, well wishes,...

Amy