I am happy to say that since last Monday's transfusion (2 units) and my Arnesp shot, I actually feel good. Don't know how long it will last, but I'm going to enjoy it for as long as I can.
Best regards to everyone.
Jean

The latest on Laura Baldwin's progress:
3 days of chemo went well, one more to go. They will do the stem cell transplant on Thursday. Please pray for her.
Jean

Hey there Jean,

Glad your feeling good. I just had a transfusion today which was 6 weeks since the last one. Told them to find the same donor and give me some more LOL. I'm on the week after chemo so it will be towards the end of the week before I perk up but am already breathing better.

That's good to hear from Laura. I'm amazed in the changes in the process. Three years ago, when I was diagnosed, the chemo process took at least 8 weeks. My age and the fact I had a heart attack about 10 yrs earlier disqualified me due to the risk.

You all have a great week.
God Bless,
Mike

Thank you Jean for sharing this information about the transplant. I know that I am likely to undergo a transplant sometime in my future and have followed several transplants. This helps so many of us who are questioning to have or not to have when/if the time comes that it is needed. Was her transplant from an unrelated donor and where is she having the transplant? I mean in what hospital, town and state.

Thanks Mike. I am already beginning to tire easily and it's only been ten days since my transfusion. I guess I didn't get high octane this last time. lol
Hi Susan. Laura is at a hospital connected to the University of Maryland. Her sister is the donor. The transplant was scheduled for today and I haven't heard anything new yet. I'm sure she would appreciate all the prayers she can get.
Take care everyone.
Jean

Hi everyone! I'm still alive, just busy & very tired.

Hosted our kids & grandbaby the weekend of my husband's 80th birthday. Preparing for it, having it, & picking up the pieces after it have done me in!

My last blood test was fine, still bouncing around in the low 10s.

Hi Everyone, I have spent the last day reading this blog as my husband was receiving his platelets and blood in the infusion center. yeah for WiFi. We are fairly new to this journey as the diagnosis was in early July. Since then a pickline has been inserted, as a port was considered too dangerous with the platelets at 19. They wanted them to be at least 50 just to do the pick line but went ahead after platelet push and the platelets were upto 39. In the future we were told the he would only get platelets when they were below 10.

He has also had 5 days of dacogen. The next round starts August 15

This disease is a new development in our cancer fight or maybe it is part of the old fight but just now being found. We thought that RCC (renal cell carcanonia/ kidney cancer) was the beast we were fighting. So it was only after the second trip to the hospital for side effects from low RBC that they did the BMB which came back with MDS. His blasts were between 13-18% depending on whether the computer or a person were doing the counting. He has several chromosone issues. I think with the 8th and 12th. but now sure. All I remember was the that something showed on 44 instead of 46 chromosones.

Please understand this is all new and for the last year I have only been concerned with the rcc tumors and whether they were growing. it appears that the tumors maybe stable cause there is no blood available for there growth. I will take any silver lining I can find.

I have lots of questions. but the main one has anyone experienced confusions and forgetfulness after the platelet and blood transfusion.

Swttea.. you can tell I'm from the south. A true "GRIT" (Girl raised in the South)

Whoa, SwtTea, you & your husband certainly have a plateful! You have a great attitude, & we'll all be praying for y'all (or is that all y'all???).

Someone else will have to answer your questions about the treatments, as my platelets are fine & so far I've not had any transfusions.

A GRIT--I like that. My granddad was born in Transylvania County.

HI SwtTea

You have a lot of new things going on. First on your MDS diagnosis when they did my BMB three years ago my blasts came out at 23% but my oncologist, based on blood test and other history determined I had MDS vs full Leukimia. He put me on Dacogen then. The same deal go in each day for 5 days. My frequency of treatments varies between every 5-6 weeks but a lot of docs want to do it every 4 wks. I just had treatment number 140. The side effects are few but fatigue, chemo fog, and confusion just from all of that are normal.

My RBC varies and I have to have a transfusion every 3-6 wks (I actually have more side effects to the blood transfusion than the Dacogen). I get flu like symptoms without the nasea for several days after and am generally sick. I guess what little immune system I have is protesting.

My WBC runs mid ones to upper twos so have to use care in public. I carry a small bottle of GermX everywhere and use it often, especially if I shake hands or touch doors, menus etc. I'm not a hermit but when I do go out I'm careful about getting around crowds of people and that kind of thing.

As for platelets, mine drop after chemo to the 30's but then build back up typically to the 70's - 80's. They put a port in and gave me three units of platelets to get them near a hundred for the surgery. I had no side effects from the platelets if that helps. If he can get them to add platelets in the near future and put the port I think he'll be delighted. It works great for the chemo and the transfusions.

I usually end up with transfuions the Monday after chemo week which is the chemo side effect hardest week. The combo of those which include the fatigue, confusion, etc that you describe along with the side effects I get from the blood which includes minor fever, night sweats and general heavy crudy feeling mess the ole brain up big time. Of course my kids tell me my mind has been like this all my life so ???? LOL

You have a lot going on but know that your in a great group and part of the family. You certainly our in mine and our prayers. It will take awhile for him to get used to what is normal with the Dacogen but the knowledge that the side effects are way less than what most folks go through with their treatments makes it a bit easier to endure. I've lost some ground on the avg blood counts but basically have remained stable with the Dacogen for several years now. The biggest thing is to use care in what you do to avoid infections or illnesses and keep a very positive attitude.

God Bless and keep coming back. I hope that helps some.

MIke

Thanks for the information. I was very concerned when G did not seem to remember being at the hospital yesterday when he woke up from his nap.
Mike, do you have any pain. G has alot of pain in his hip and trouble walking. Nothing shows on the pet, ct,or mri so they do not think it is related to rcc. Is tynenol ok to use? G tries to limit the oxycodone but has to have something that will not damage the remaining kidney.. i worry as this seems to be getting worse.
By the way G is 64.
I hope everyone is enjoying their Saturday and not melting in the heat. T

I received a very brief e-mail from Laura who received her bone marrow transplant on Thursday. She said it went well but she is weak and very tired. Of course, that is to be expected. Keep praying for her.
May God bless all of us.
Jean

Glad to help. My forgetfullness comes mostly from the chemo fog during and the week after the week I get chemo but is nothing serious. It sounds like your dealing with the symptoms from both different things that are going on. I have a pretty high pain tolerance. I've had a tendon or cartilidge messed up in my shoulder for quite a few months now and have been able to get by on tylenol. The doc says it's ok to use it with the Dacogen. That is unrelated to anything else.

The kind of pain you describe I don't have so can't really offer any help.One of the things I have to be careful about is I get the woozy's. I am on meds to keep the blood pressure down (normal for me is 110 over 63). That level cause me to get a bit faint when I stand up at times but when the red cell count get's down that seems to have an impact too. Doc says it's normal but I do have to be careful.

I hope you figure the hip and other stuff out as it appears to be the majority of his discomfort and problems. I don't know anything about the rcc. I've not chatted with many folks on Dacogen but most seem to be abou the same as me on side effects. My doc says he has one lady that's over 80 who has been on it quite awhile.

Good luck and God Bless.
Mike

Hello everyone, well my life has taken a turn to being sort of normal. Way back in January, we lost just about everything that we own in the floods that devestated South East Queensland. We finally moved back into our "new" home last Friday. Tomorrow I am off to see my doctor to see how everything is going. Its been a year full of turmoil, physically and emotionally draining. Will be able to drop in more frequently now we are back on line.

Nixmuts, I had no idea that you were flooded out. Of course, we've heard about the Queensland flooding, but didn't connect you with it.

I certainly hope that life is on an upswing for you. How have you been doing healthwise?

I think the stress of the floods 'helped' me to lose about 8kg, which i'm not knocking back. I really dont think i feel any more tired since this time last year, but sometimes my leg aches, paticularly my right one. I also have aching joints and feel weakness in my hands, but that maybe arthritis? I will ask the doc today. Apart from that, I feel fine.