How did you get diagnosed?

I have been going to a hematologist/oncologist for approximately 2 years off and on because bloodwork keeps coming back abnormal. About 18 months ago, I had a bone marrow biopsy where cancer was ruled out. Now, my bloodwork results have changed again. I have a low WBC (2.9) and a low neutrophil count (1.4). Today my Dr. said that my LAP score came back at 17, which is still within the normal range of 11-95. However, he mentioned that a score lower than 11 would indicate CML and he wanted to "keep an eye on it". Now I have to wait 2 months and go back for another blood test. I have learned so much because I thought you just go into the doctor and they say YES - you have cancer or NO - you do not. This has not been like that. It has been a huge stresser over a period of months (and years!). Anyway, I would like to know if this is normal or if anybody else's diagnosis was much easier. I have no idea what the next blood test will bring to my life. Help!

My daughters diagnosis took 7 months for her bone cancer (Ewings Sarcoma) By the grace of God, it hadnt spread yet that they could tell at all and she has been in remission for 2 1/2 years. If I were you, I would go to get another opinion. If you feel there might be something out of whack, then getting another opinion would be the right step. Blessings to you and let me know if we can help out more.

 Carol

My experience was the opposite of yours. After an encounter with air freshener (I've been allergic to fragrances and their chemicals for over 20 years) I felt extremely fatigued and short of breath. That lasted for nearly three weeks. At the time I was a teacher (part-time) and the school wanted to know when/if I was coming back. Finally I scheduled a doctor's appointment.

A day or two before the appointment I began feeling much better and nearly cancelled, but I decided to go ahead. The doctor checked everything out and ordered a routine blood test. That was on a Friday. On Saturday the doctor called and said I would need to come for another test the following week. On Sunday I got a call to immediately report to the hospital because my red blood cell count was too high. They kept me for about 36 hours and ran some tests, including the bone marrow biopsy. Emotionally I felt like I'd been hit by a truck.

I was diagnosed with CLL but it's been two years and I'm waiting on treatment. I feel good (better than I did two years ago) and that's what counts. I can imagine your stress in waiting for results, but as long as you're feeling good you'll just have to put it into the back of your mind and try focusing on something else. (I know that's not easy!)

 

On 2/20/2008 JMRo4 wrote:

I have been going to a hematologist/oncologist for approximately 2 years off and on because bloodwork keeps coming back abnormal. About 18 months ago, I had a bone marrow biopsy where cancer was ruled out. Now, my bloodwork results have changed again. I have a low WBC (2.9) and a low neutrophil count (1.4). Today my Dr. said that my LAP score came back at 17, which is still within the normal range of 11-95. However, he mentioned that a score lower than 11 would indicate CML and he wanted to "keep an eye on it". Now I have to wait 2 months and go back for another blood test. I have learned so much because I thought you just go into the doctor and they say YES - you have cancer or NO - you do not. This has not been like that. It has been a huge stresser over a period of months (and years!). Anyway, I would like to know if this is normal or if anybody else's diagnosis was much easier. I have no idea what the next blood test will bring to my life. Help!

 

My diagnoses was done after a week of tests- all were neg. but the Bone marrow Biopsy was positive for Multiple Myeloma. I was only 39ys. old. I am a 7 yr. survivor- using the chemo ONLY when necessary! I use a whole body approach-no white flour or white sugar, take resveratrol tablets & Juice plus products, plus omega#3. I also drink one glass of red wine a night. I have been chemo free for 3 yrs. NOW about you- go to Cancer Treatment Centers  or The Mayo clinic!!!! Forget wasting your time with the local Dr. & Tests. These other cancer research centers have the NEWEST & Latest tecnology, treatments, tests,etc!!! I know if I had stayed local-the drugs they were going to use would have hurt my stem cells- so I went (drove 6hrs) to Mayo! Thank God!! It is your life- do not be cheap or cut yourself short when it comes to your health and the team of Doctors you go to- it is worth going to the best! Good luck, Kathy

 

On 2/20/2008 JMRo4 wrote:

I have been going to a hematologist/oncologist for approximately 2 years off and on because bloodwork keeps coming back abnormal. About 18 months ago, I had a bone marrow biopsy where cancer was ruled out. Now, my bloodwork results have changed again. I have a low WBC (2.9) and a low neutrophil count (1.4). Today my Dr. said that my LAP score came back at 17, which is still within the normal range of 11-95. However, he mentioned that a score lower than 11 would indicate CML and he wanted to "keep an eye on it". Now I have to wait 2 months and go back for another blood test. I have learned so much because I thought you just go into the doctor and they say YES - you have cancer or NO - you do not. This has not been like that. It has been a huge stresser over a period of months (and years!). Anyway, I would like to know if this is normal or if anybody else's diagnosis was much easier. I have no idea what the next blood test will bring to my life. Help!

JMR04,

I would go get other opinions. I went to 3 chiropractors and 7 different doctors, complained about sever lower back pain...not feeling good...my sister works in a small town hospital and told me to go see a PA there he was really good...I was having a really bad day, my job was mad I was missing work..I just got a position in the company I worked so hard for and loved my job, anyway, I cried to this poor doctor, looked him right in the eye and said look, I know my body and there is something wrong inside, please don't be my doctor be my hero! It worked. He found what the others could not..I had Hodgkins stage 3. I lost my job...they demoted me when I wanted to come back to the lowest position they had..so I quit...but God closes one door and opens another...the doctors told me because of the chemo & radiation I would not be able to have children,,,1 month after I was done with radiation I have a healthy 8 month old boy. I know what it is like to worry & wait. I didn't know to worry was a sin either, you do need to get a peace of mind what is wrong so keep searching...don't let those doctors treat ya like cattle...but no matter what the outcome is....live your life..be happy and enjoy what you have.

I was diagnosed Cll last march. I had made several trips to my primary physician for the past two years.  It was always pain somewhere, or  something hurting or aching. He would run test and the test would always come back with nothing. My doctor said that I was getting older and my body was changing.  My husband and my doctor(s) thought I was crazy,  because all I did was complain.  I finally went back to my doctor and demanded he find out what was wrong with me, and that I wasnt going to leave him alone until he did!!  This got his attention, and he sat right there and we started going back over my file. Finally I'd got his attention.  We were in his office for an hour talking about my aches and pains and reviewing my file. He drew some blood and that got the ball started. Of course my white blood count was high(er).  As we looked back over my file.. it had been getting higher and higher for the past 2.5 - 3 yrs.  We drew more blood, further test. (he now had something to look for) and then sent me to an oncologist. Of course they took blood and more blood and then finally after 1mo from my showdown with my primary doctor I was diagnosed.

Your right.. they will not give a "yes" answer until they are 150% sure.  In the meantime your driving yourself nuts. All over the internet, trying to find information all while in disbelief.  

Currently I'm in the watch-n-wait stage..   I've changed my diet.  I eat healtheir, take viatmins and mineral supplients.  I feel better today than I did a year ago.  (Although I can feel my body making changes)  I've armed myself with as much knowledge as I can about CLL.  Knowledge is power!! 

 I cant tell you what to do, but if I may suggest.. Get a second opinion.  Find yourself another doctor and keep going until your satisifed.  This is your body your health.  Its precious, dont let anybody play with it.

 

On 2/21/2008 Jamilah wrote:

My experience was the opposite of yours. After an encounter with air freshener (I've been allergic to fragrances and their chemicals for over 20 years) I felt extremely fatigued and short of breath. That lasted for nearly three weeks. At the time I was a teacher (part-time) and the school wanted to know when/if I was coming back. Finally I scheduled a doctor's appointment.

A day or two before the appointment I began feeling much better and nearly cancelled, but I decided to go ahead. The doctor checked everything out and ordered a routine blood test. That was on a Friday. On Saturday the doctor called and said I would need to come for another test the following week. On Sunday I got a call to immediately report to the hospital because my red blood cell count was too high. They kept me for about 36 hours and ran some tests, including the bone marrow biopsy. Emotionally I felt like I'd been hit by a truck.

I was diagnosed with CLL but it's been two years and I'm waiting on treatment. I feel good (better than I did two years ago) and that's what counts. I can imagine your stress in waiting for results, but as long as you're feeling good you'll just have to put it into the back of your mind and try focusing on something else. (I know that's not easy!)

 

 

On 2/21/2008 ItsMyTime.... wrote:

 

On 2/21/2008 Jamilah wrote:

My experience was the opposite of yours. After an encounter with air freshener (I've been allergic to fragrances and their chemicals for over 20 years) I felt extremely fatigued and short of breath. That lasted for nearly three weeks. At the time I was a teacher (part-time) and the school wanted to know when/if I was coming back. Finally I scheduled a doctor's appointment.

A day or two before the appointment I began feeling much better and nearly cancelled, but I decided to go ahead. The doctor checked everything out and ordered a routine blood test. That was on a Friday. On Saturday the doctor called and said I would need to come for another test the following week. On Sunday I got a call to immediately report to the hospital because my red blood cell count was too high. They kept me for about 36 hours and ran some tests, including the bone marrow biopsy. Emotionally I felt like I'd been hit by a truck.

I was diagnosed with CLL but it's been two years and I'm waiting on treatment. I feel good (better than I did two years ago) and that's what counts. I can imagine your stress in waiting for results, but as long as you're feeling good you'll just have to put it into the back of your mind and try focusing on something else. (I know that's not easy!)

 

 

Hi Jamilah - I too have been diagnosed with CLL.  I saw your reply and was wondering what it is that you do to deal with this.  What changes (if any) have you made and how is it working for you. 

You have my complete empathy at having to watch and wait.   I have been seeing my hematologist/oncologist for about 5 years now.  I was sent to him because I was anemic, RBC, HCT, PLT and WBC and I had lost a lot of weight for no reason. My percent of lymphocytes has been fluctuating.  He seems to be watching for the WBCs to increase and the lymphocytes to increase.  I guess they are supposed to be less than the neutrophils or granulocytes.  His first guess was Lymphoma, then Hairy Cell Leukemia then he said he suspects something will show up eventually having to do with my B cells.  I have had 2 bone marrow biopsies one from hip and the other from my sternum when I had my heart valve repaired last year. Because I had severe sinus and lung infections that wouldn't go away my doc discovered that I have hypogammaglobulinemia and I am receiving monthly IVIG treatments.  I haven't had an infection since I started, but I do have candida on my tongue and in my throat. My doc told me I would be with him for a long time.  He seems to really care about me and wants me to have a success story. I even have his personal cell phone number! I see him or his PA between my IV treatments and everytime I'm there I get new blood tests.  I am always very nervous at these appointments.  My BP is always higher then than any other time!

All I can say to you is hang in there and find a doctor you are really comfortable with.  Trust yourself to know your own body.

 

Mari 

 

 

On 2/21/2008 ItsMyTime.... wrote:

 

On 2/21/2008 ItsMyTime.... wrote:

 

On 2/21/2008 Jamilah wrote:

My experience was the opposite of yours. After an encounter with air freshener (I've been allergic to fragrances and their chemicals for over 20 years) I felt extremely fatigued and short of breath. That lasted for nearly three weeks. At the time I was a teacher (part-time) and the school wanted to know when/if I was coming back. Finally I scheduled a doctor's appointment.

A day or two before the appointment I began feeling much better and nearly cancelled, but I decided to go ahead. The doctor checked everything out and ordered a routine blood test. That was on a Friday. On Saturday the doctor called and said I would need to come for another test the following week. On Sunday I got a call to immediately report to the hospital because my red blood cell count was too high. They kept me for about 36 hours and ran some tests, including the bone marrow biopsy. Emotionally I felt like I'd been hit by a truck.

I was diagnosed with CLL but it's been two years and I'm waiting on treatment. I feel good (better than I did two years ago) and that's what counts. I can imagine your stress in waiting for results, but as long as you're feeling good you'll just have to put it into the back of your mind and try focusing on something else. (I know that's not easy!)

 

 

Hi Jamilah - I too have been diagnosed with CLL.  I saw your reply and was wondering what it is that you do to deal with this.  What changes (if any) have you made and how is it working for you. 

First, I quit teaching. It was only part-time and I was also working from home part-time, so I extended my work from home hours. This made me able to sleep when I need to. There are some days when I have tons of energy and others when I just can't get going. If I'm tired, I nap without guilt. I also switched to all organic foods and drink plenty of water. And I try to get sunshine. We were living up in Wisconsin when I was diagnosed but my husband agreed to look for a job further south. We're in Kentucky now and it's much better. The air is also fresher, which helps.

I belong to a group called CLL_Alternative_Therapies@yahoogroups.com. This has also helped me learn about alternatives, such as herbal treatments, as well as the traditional treatments. There are members of this group who have tried both. I'm still researching my options and I don't want to do anything unless I'm fairly sure it will have a good outcome.

I recently read a book called Racing to a Cure by Neil Ruzic. He was diagnosed with a more aggressive lymphoma but he stayed well for several years without treatment and spent his time flying around the country, talking with scientists about the coming techonologies. He does also have some discussion about CLL. I found the book at the library.

Finally there's a newsletter called CLL Topics. I can't remember how I found it, where it was through the Yahoo group or just by googling.

One more thing. I carefully avoid illnesses by washing my hands thoroughly and often, and by wearing a mask when I go out in crowds, especially in the winter time. Here in Kentucky the flu is at epidemic levels and I'm getting cabin fever from staying in and trying to avoid it. My 18-year old has had the flu for a few days and I need to avoid him, too, unfortunately. I bought my cotton masks on the web. I think the company is called Breathe Right, or something like that.

I hope that helps.