Is there a reason nobody replies on this board? I really need some advice. I really need some support right now. I just hope there is someone out there.

Hi,

I feel your frustration, as my recent post here has been read by 21 readers; but answered by none. If you had a back problem, you'd have no trouble getting a lot of feedback on that bulletin board. Those guys over there are like a big family, that chats back and forth regularly.

To answer your concerns...My wife has CLL (read my post from a few days ago, if you haven't already). She has been seeing a hemotologist regularly for the past six years, after our family doctor's suspicions concerning her high white count. The hemotologist first performed a bone marrow biopsy, which confirmed the leukemia. Fortunately it is "chronic" or slow progressing. Unfortunately there is no cure for this type.

The biopsy itself was a simple procedure, done in day surgery. They insert a rather large needle device into both hip bones and draw out a piece of bone and some marrow. I think my wife had one stitch in each entry point. She came home a couple of hours after the procedure. Her bottom was tender for a few days.

I believe we had an appointment to visit that doctor, a few days after the biopsy was taken. He explained that the suspicions were confirmed, explained all he could; and answered all of our questions. Our initial reaction, of course, was shock and disbelief. But now...six years later, we rarely even think about it. The checkups are routine; and take all of five minutes. The blood is drawn, put into the computer and results are discussed for a couple of minutes.

I don't know if I've helped you at all. I will continue to check this board, so please do come back and let us know what you find out. Or just come back and talk. Good Luck!

Thank you, thank you, thank you. I check every day to see if anyone has answered me yet, you are the first. Did your wife have any other symptoms when this all started? Do you know what her WBC was that made the doctors suspicious? Mine is elevated to 14.5 right now, it was at 14.1 and stable, but over the summer it was over 20. I also had Mono, could this have any effect? I have so many questions, and I know I will be grilling the doctor, but I just want to talk to someone who has been through this. I applaud you, cancer is not easy to deal with. And I thank you so much for listening to me.

Marie

Hi again Marie,

Maybe we'll just keep this board going for a while, until others decide to join in.

As is normal with CLL, my wife's was discovered during a routine physical exam. She hadn't had any symptoms. I don't believe she's ever had mono either. During that initial physical exam, her white count was around 12.4 (which is really 12,400). The "normal range" is between 4 and 10 (or 4000-10000). When she got rechecked 90 days later, her count had climbed to 16 (16000). Over the past six years, since being diagnosed, her white count has climbed to 57.3 (or 57300). Every successive blood test results in higher readings. Her reading has never dropped. With her red count being at the bottom of the "normal" range (and ocassionally dipping below), she is sometime anemic. Even then, she doesn't really display the typical signs of being tired "all of the time". She is generally wide awake and raring to go throughout the day. But if she has a chance to sit down by 7 or 8 o'clock in the evening, she'll fall fast asleep.

What has me concerned; and prompted my first post on this board, is her recent body aches. She is sore from her feet to her neck. And I mean really sore. There doesn't seem to be any good explanation for it. We eat healthy. She walks and exercises on a regular basis. We don't smoke. Our alcoholic consumption consists of maybe a glass of wine per week on average. She is not one to complain about the little things. So when she wakes up in the morning and can barely pull herself out of bed, I know she is hurting. Or when I see her struggle to get up a flight of stairs, I believe something is wrong. But, as I said...her hemotologist doesn't really respond or seem very concerned about it. So, my wife just takes asperin (per his suggestion) and deals with it.

Be sure to write down any and all questions that you want to ask the doctor. Thats what we did. It really helped with the initial impact of the whole thing.

Keep in touch!

I'm sorry to hear about your wife. Have you guys considered a second opinion? From what I've read, the pain is common with CLL, but I don't know to what severty. The only thing I can suggest is to find another hemotologist, and see what he says.

I do plan on writing everything down. I guess I'm just really scared. I'm just waiting to exhale. If it's cancer, I can deal with it, but not knowing what it is, is just really scary. I get anemic very often, and the doctor has mentioned it to me before. I just don't know why my WBC is so high. I guess I'll just have to wait and find out.

How does your wife deal with it? I know you said you guys don't even think about it anymore. I'm really more concerned about my family than me. I know I can handle anything they throw at me, but I have two small children, and parents who will break down. I don't know.

Thank you for keeping in touch. Keep me posted on your wife, I hope she is feeling better. I'll let you know how everything turns out.

Marie Francis

Hello to both Dbledutchs and chitrick. I can't speak for anyone else, but I tried to reply yesterday... I'd only logged on for the first time on 12/03. I started typing a reply at home, having first viewed the site while on break at work, but I had left my password there, and couldn't post. Dbledutchs, I know that you feel very scared, but take comfort in chitrick's words.
If your doctor has noted a measurable abnormality in your blood counts over a period of time, at least you
aren't facing the urgency that's encountered with the more aggressive cancers. I admit that Chronic forms of Leukemia are not my area of personal knowledge. Its always seemed to me that the very fact people can live a lifestyle like the one chitrick describes (in which monitoring his wife's CLL has become so routine) underscores that such people have enough longevity to profit from the rapid pace of medical breakthroughs.
We live in an age when amazing new treatments are becoming available with a frequency unrivaled in the past. And ever-increasing knowledge of human genomes
and DNA hold, in my humble opinion, great hope for the eradication of cancers like these, perhaps very soon!
Chitrick, I can't really speak to your situation and questions all that much, as I am a suvivor of AML, about as different a disease from your wife's as a cancer could be and still have the "L" in common. Mine
was "Acute" (which was once summed up for me as being
"easier to cure...if it doesn't kill you first") and "Mylogenous". I was diagnosed in October, and I was told at one point that if I hadn't come in when I did, it was unlikely I would have seen Christmas.
Thats what I meant when I said "aggressive". And I didn't even look all that sick, really. I think you can probably see where I picked up that nick-name/ pen-name of "BloodPhoenix", the meaning of which should be pretty clear. While I once could have told you all those various blood counts you quoted, and remember having daily CBC tests run in the hospital, I've long since forgotten them (I was diagnosed in '93) I only remember that a routine test to check the blood level of my anti-seizure medicine happened to catch extremely low platelet counts. At first they thought it was a mistake at the lab. So they called me at work and had me go to a nearby office to repeat the test. When they got the results, I received a second call: immediately leave work and check myself into the hospital, and don't get into any accidents on the way. Why? I asked,
naively. And was told something to the effect that my blood had the clotting properties of water. At first, they connected my odd blood counts to my Epilepsy meds - like most anti-convulsants, Depakote was known to have a side effect of "bone-marrow suppression". But an aspiration soon revealed my marrow was clogged with immature white cells - blasts. And that was when my life turned into a whirlwind.
About the only thing I can offer you Chitrick, is a possible insight into the achiness you mentioned. Before my diagnosis, I had believed for a long time that I simply had a nasty flu, partly because of generalized muscle and joint aches, along with fatigue. But your description of your wife's situation brought back memmories of my initial return from the hospital. The transition from a hospital bed was not kind to me. At home we had an old futon which was both hard as a rock and lumpy. I can recall distinctly the feeling that every one of my bones was a seperate, discernible ache. I was so desperately tired, but could not sleep on that bed. I was miserable. What I finally did was lined up pillows, a soft robe, and a comforter to produce a sort of mound I could lie atop and sink softly into. Had it not been for that, I would never have slept a wink. I wasn't home even ten days, and when I went back in for my second round of heavy-duty in-patient chemotherapy, I was actually relieved to return to the hospital. Before it was done, I had three
rounds like that: I would be given about five days of chemo, then spend the rest of a month in the hospital suffering the after effects, and trying to fight off opportunistic infections. Have I got some stories.
Marie Francis, do not feel alone. IMO, one of the most helpful things in dealing with any cancer is to find a support group of others who are facing it. (most cancer patients share many common experiences even though their particular ailments may vary). In effect though, thats what you've already done by posting on here. This is a support group. But the face to face human contact has its own qualities to recommend it. Also, do not lose your sense of humor. Try to make yourself laugh,
and attempt to keep your eyes open to the ridiculous nature of some of the situations you'll find yourself in (even though at times you may want to both laugh and cry). I'm sure you've heard the old adage "There are no atheists in foxholes". That analogy always seemed appropriate to me. If you're diagnosed with cancer, you become a soldier in a war of Life vs. Death, with your body as the battleground. And YOU, are going
to WIN. So following that old adage, it doesn't matter whether you haven't attended church in 15 years, or whatever. I'm no evangelist, but God is real, and he hears prayers. I know my survival hinged upon that, because I pleasantly surprised my oncologist. He knew how effective the chemo could be, and he expected me to be one of the patients that breaks his heart - the ones that he loses. (He didn't confess that to me until much later). So include prayer in your treatment plan
like any other medicine. But all of this is assuming you even HAVE cancer, which from my understanding has not yet been confirmed? Hang in there Dbledutchs, you're going to be alright. And I promise that I will try to reply to both your posts if I have anything to offer.

Hi Marie and BloodPhoenix,

Great messages!! Mine will have to be brief, as my wife is just waiting for me to hop in the shower, so that we can leave for a day up in Wisconsin. Just wanted to thank you both for your replies. I will get a chance to write more on Monday (hopefully).

Marie...I realize that I have done nothing but write about my own personal situation with my wife's CLL. And I also realize that what you are looking for, is for your mind to be set at ease about your own possible findings. I'm grateful that BloodPhoenix has come to join us. Their message did a wonderful job of addressing both of our needs. Thanks BloodPhoenix! And very happy to hear your story of conquering your AML! There are so many people out there who have/are experiencing leukemia of one type or another. I am surprised this bulletin board remains as quiet as it does.

I'll be posting another message on Monday. I hope you guys are having a good weekend!

Hi! I hope you had a great weekend. It's okay if you talk about your wife's leukemia, I can listen too!! I agree, bloodphenoix really made me feel better. My appointment is on Wednesday, I'll let you know how it goes. But I just wanted to say, I'm here if you need to talk, I may not know everything, but atleast I can lend a kind ear. I hope she is feeling better, how has her pain been?

Hope to hear from you soon!!

Marie

Marie...Not sure if you'll be reading this message prior to seeing the doc. If so...Good Luck with it. I am very curious to know what you find out. Sorry that I didn't get to come on and write anything, as I had hoped to do on Monday.

Thanks for asking about my wife. Over the past several days, her pain is mostly concentrated around her left knee and her neck area. Her left ankle remains quite swollen, for no obvious reason. She postponed her regularly scheduled blood work, from today (Wednesday) to next Monday. With the holidays approaching, she is meeting with her old college girlfriends today.

Is/did your husband (or anybody else) go with you to your appointment today? It is really important for you to have someone close, who can be by your side, in any situation. I, of course, am my wife's support. In fact, the rest of our family and most of our friends are not even aware of her cancer. Initially (6 years ago) I had shared the information with a couple of friends; and my wife got very upset. I guess her thing, is that she doesn't want anybody feeling sorry for her or suddenly treating her differently.

I'll be keeping my fingers crossed, that whatever information that you leave the doctor's office with today, is positive and informative.

Its funny how different people view life/death in very different ways. Over the weekend, my wife said to me, "I'm scared of dying". We were both raised Catholic, believing in God and "live after..." But when it comes to thinking about one's own demise, she is freightened that there may not be anything that follows. I, on the other hand, have no fear of death. I go outside every morning before the sun comes up; and walk 3-4 miles. When I look into the sky and see such beauty, I am further convinced of God's existance. I know that you've indicated you don't really fear for yourself, but rather your young children. I guess its my believe in a Creator, that helps me to understand that my loved ones would be cared for if anything were to ever happen to me.

I definately agree with BloodPhoenix...that, should you find out that your condition is serious, it would be a very good idea to join a support group. This bulletin board can help us to communicate our thoughts and support. But this board doesn't allow us the face-to-face contact that a live support group would.

Please write at your earliest convenience!

Hi there. Sorry it took me so long to reply, it's been a crazy week.

My husband went with me to the hemotologist, he's very supportive. I didn't really like the doctor. The nurses took more blood, and the other nurse checked me, and the doctor came in and talked to me for two seconds, and it seemed like he was in a real hurry, and we had a lot of questions for him. He said that as of right now there are no cancerous cells in my blood, but that my WBC is still high and my red blood cells look funny (I guess some of them are smaller than normal, and some of them are hollow). I knew a lot of what he said because I had done research, which I don't think they counted on because they were explaining things to us like we were 5. I asked if it could develop into CML, and he was taken aback by that question. He said he didn't know, and that if he had something else to call it, then he could say it isn't cancer, but he couldn't. So I have to go in for more tests next week. It's a waiting game now...what's wrong with me, is it just something that is there. They said I looked healthy though, which is good. I still have the fatigue, which seems to be getting worse. I feel like they are keeping me in the dark. They don't really tell you what you want to hear I guess. But for now, I'm content.

I wanted to touch on what you said about death. I am afraid of death too. I don't know if it's because I've never been particularly religious or because I'm a bit worry wart, but I think about it daily. What I do, and I don't know if this helps any, but I think about the greater sceem of things. I think about the moon and how it has been here for millions of years, it has been here before us, and it will be here after us, somehow that is comforting to me. I also think about the total circle of life, you are born, you live, you die a sort of recycling process. When I was younger I used to believe in reencarnation, only because I couldn't imagine not being here, now I'm not so sure. Perhaps this isn't it, perhaps when you die there is something greater out there, and when you pass into it, you'll wonder how you could have ever been afraid. I'm not expert by all means, I just think that your spirit lives on in memories, and somehow you are returned to that in which you came from. I don't know if that helps. I really applaud you though, I know it must be hard for you. Your wife is a very lucky woman to have such a wonderful man who will support her and take care of her.

I was also surprised that you guys haven't told anyone. I don't know why it surprised me, and what you said made sense. People treat you differently when they know something. In fact, I actually have a story about that. When I first had to go and see the doctor, I had called my husband at work, well, I told him what was going on, and I had to go to the cancer center. He came home early that day and took me shopping to cheer me up. The only person he told why he was leaving was his boss, and when he went in the next day, every body knew, and they were all saying, I'm so sorry, is your wife okay. Well, he is a very private guy, so he wasn't too happy about that. And I too felt like, I'm not dying, I would really like to keep this private. So I guess I do understand, and I applaud your wife for making that desicion.

My son is glued to the TV, the wiggles are on, they are this australian band, that sing and dance, he loves them!! I have to go to my daughter's school today for a decoration party. I volunteer there on Wednesdays, and I couldn't go this past wednesday, I felt so guilty!!!

I hope you are well, and I hope your wife is well, tell her she is in my prayers, and I know she'll beat this, because when it comes right down to it, what other choice do we have?

Marie

Hi Marie,

Well it seems that your doctor appt was both good and not so good at the same time. Good that the doc is saying "no cancer". Not so good that there still seems to be a problem; and that more tests are required while uncertainty still exists. Do you know what your red count was? I know you said that there seemed to be something abnormal with the cells themselves. How low is the count? Is your fatigue being caused by anemia? I think its great that you went to your appt, prepared, having already researched things yourself. And I'm happy to know that you have a husband who is with you all the way.

It looks like we have this forum all to ourselves. I'd like to encourage anybody who comes here and reads these messages...to join in! BloodPhoenix, where are you?

Marie...thanks for your input about death. Yours was an interesting outlook. I've often thought of the concept of "coming back" or reincarnation. I know there is the belief that each new life is a step up or higher level from the previous, until finally the spirit reaches immortality. Thats sort of neat to ponder on sometimes.

Have you read any of the other forums on HealthBoards.com? I know that you've only posted on this one. But if you get the chance sometime, go into some of the other more frequented subjects. I've visited the "Back Problems" forum a lot, as I've had my own history with a problematic back. But I've also clicked on some of the other forums, out of curiosity. Some messages are informative, while others are quite sad. Then, there are some that make you wonder if the person writing the message is even serious. Its an interesting pass-time, to say the least. I suppose that with two young ones, you probably don't have any trouble filling your time. But if you ever do find yourself with time on your hands, check out some of the other subjects.

I hope you and your family has a pleasant weekend. Please stay in touch; and let me know how you are feeling. My wife's next blood work is this Monday. I'll let your know how it goes.

Take care!

Hi folks:

To answer your topic question: even for regular responders, sometimes it's hard to know what to say. Besides, it seems that you've found kindred spirits in each other.

Best of luck to both of you and your families,
Jay

Hi Chitrick & Marie, Found I had CLL in 1993 (hi white count). Dr wanted to do send me to get the spoon needle biopsy, but the oncology Dr did a thousand dollar blood test instead to confirm CLL in 1994. Over two or three years it rose to 58K and stayed in that area until 1999 when I had surgery for throat cancer. Was in the hospital 37 days came home then 4 days later started 37 days of radiation (my life time limit). Months later my white count was around 10K. Not sure what it is now - it's up some but not to the 58K I was used to.

Of course CLL is the 'best' one to have and to my best knowledge has never cause me any pblms. It can become acute however. BobE

Does your wife have any other symptoms? enlarged spleen - liver?

How did everything turn out, DB? How is your wife, Chit? Hope things are going ok.:)