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Wondering

hilde451's picture
hilde451
Posts: 223
Joined: Oct 2009

I have not seen Donald 51 here for a long while and wondering how he is doing.
I am still in remission but have my ups and downs. My blood work still has not gone back to normal since the Zevalin in December of 09.
I am also wondering how do Oncologist know that it is not still in your bone marrow.
I am so wondering about that. I have FNHL stage 4. Also in my bone marrow.
I have been so tired of late.
I am not do to go to my Oncologist and Scan in January 8th.
I am keeping up by reading and wondering how everyone is doing. I dont want to bore anyone. Thank you for all your past support.
I wish you all well, Hilde

allmost60's picture
allmost60
Posts: 3162
Joined: Jul 2010

Hi Hilde,
I wonder the same thing except in the reverse...I have stage 3 FNHL with no bone involvement, but always wonder how my doctor will know if it goes in my bone marrow? I had a clean BMB back in 2010, but wonder sometimes if the cancer has gone there. I asked him once and if memory serves me right, he said if my RBC's or Platelete counts get out of whack it would be an indication that something might be going on in the marrow. My counts are good...(in the normal range), so I guess until that changes I shouldn't worry. Have you asked your doctor how he knows it's not still in your bone marrow? I read two articles on blood marrow involvement tonight but didn't find an answer for you. Just call your doctor and ask him. I did read that the longer you go with no treatment and if you are feeling pretty good, then your probably still in the clear. My doctor said that the fatigue from chemo can stay with us for years to come, and the older we get, the more tired we get naturally. I hate it when he says that, because I'm looking for a "fix" instead of accepting the tiredness caused by ageing. Have you read up on long term side effects from Zevalin? I'll bet you fatigue is listed...(just guessing). I was so glad to see you check in today...I think about the old gang and how so many have just dropped away from posting. Let us know if you get your questions answered. Take care Hilde...Love..Sue
(FNHL-2-3a-6/10)

hilde451's picture
hilde451
Posts: 223
Joined: Oct 2009

Thank you so much for answering my post. It is so hard sometimes just to think about all this.
I am getting older and I suppose sometimes age does have something to do with feeling tired I suppose. But maybe not. I will find out when I go back to the Oncologist.
Hope you are doing well. It was so nice to hear from you.
I can not believe how fast time is going , December 23 will be 3 years for me for the Zevalin.
I have read about Zevalin and its side effects. And always wonder how many people relapse after a while after receiving the Zevalin . One side effect is Leukimia. It just makes you wonder. Hope to hear from you again and I wish you well. Hugs, Hilde

jimwins's picture
jimwins
Posts: 2001
Joined: Aug 2011

Hi Hilde,

It's great to hear from you. I pretty much agree with Sue.
I'm sorry you're having problems with fatigue. I've been finished
with Chemo (R EPOCH) for a year now and I still get tired.
I will say it is a little better but I do tend to nap most days but
I have difficulty sleeping a good long normal sleep at night anymore.
I typically wake up in 4-5 hours.

I hope things get better.

Jim

hilde451's picture
hilde451
Posts: 223
Joined: Oct 2009

Hi Jim

I am the same way I dont sleep at night anymore either and before all of this I was a good sleeper , I would lay my head down and be gone.
Hope you are doing well.
I had other health problems before I had NHL. I have had open ulcers on both ankles when I was just 27 years old. And one ankle was open for 10 years.
They finally had to skin graft it. I have vascular disease and a history of blood clots. So illness is not new to me.
But this is the most baffeling for sure. I often wonder how many have ever relapsed after receiving Zevalin.
Well Jim I wish all the best. Hilde

miss maggie
Posts: 929
Joined: Mar 2010

Dear Hilde,

It is nice to hear from you again. I think your question was very concerning. Your question gave me something to think about. I am glad Sue responded so quickly with a possible answer? I never had involvement in the bone marrow. Even though I feel good, I wonder sometimes if there is something lurking inside my body.

Hilde, If I were you, I would make an appointment with my oncologist before Jan 8, 2013> Or if you doctor doesn't minding talking to you on the phone, give a call.

You are not boring anyone. Today sounds like a down day for you. I am glad you shared your feelings to us.

God Bless and feel better. Love Maggie

hilde451's picture
hilde451
Posts: 223
Joined: Oct 2009

Wow are you perceptive. It was kind of a down day for me. I seem to sometimes have many.
I spent the last 10 years looking after my Mother besides dealing with this and other health problems.
But my mom died in 010, I really miss her. It has been so hard. You watch your loved one die and it seems to hit you in the face about yourself.
Why is it when you do not feel well you seem to be thinking something is wrong. I hope you are doing well. I am waiting till January to do my scan. Then we will see what happens.
Thank you for answering my post and glad to see you here.
much love, Hilde

hilde451's picture
hilde451
Posts: 223
Joined: Oct 2009

Wow are you perceptive. It was kind of a down day for me. I seem to sometimes have many.
I spent the last 10 years looking after my Mother besides dealing with this and other health problems.
But my mom died in 010, I really miss her. It has been so hard. You watch your loved one die and it seems to hit you in the face about yourself.
Why is it when you do not feel well you seem to be thinking something is wrong. I hope you are doing well. I am waiting till January to do my scan. Then we will see what happens.
Thank you for answering my post and glad to see you here.
much love, Hilde

donald51's picture
donald51
Posts: 59
Joined: Feb 2008

Hello Hildi,
Long time no see! I have not checked in here for quite some time as I tend to spend my time staying busy. I have always preferred being active as I believe doing so will keep you from developing associated issues that come from "just sitting around and getting old." I am still walking just about every day (2-5 miles) and find more projects to do around the home that I end up juggling time to work on them.
I had my most recent ct-rituxan infusion-Dr. visit last month and the Dr. said everything was still negative and I will have only two more R infusions and be removed from it. Finally, after five years. My initial maintenance treatment was only to be three years but got extended. So, I have endured the time, even though I have always felt I didn't need the rituxan and have endured the effects that have possibly come about due to it. "Life must go on" as long as God allows me to awake everyday. I will have my final infusion in January 2013 and then find out if I can continue as I have without any anxieties. My wife is more concerned about than I am! Faith, mind over matter and staying positive are our greatest defenses.
I hope that your visit in January will be as good for you as mine will be and that you find comfort and strength to overcome all of your issues. Thanks for your concerns and I will check back in soon.

Always,
Stay strong and Positive†

hilde451's picture
hilde451
Posts: 223
Joined: Oct 2009

It was so very nice to hear back from you.
I am glad that you are doing as well as you are. It is so mind comsuming sometimes.
For the most part I try not to think about it . Only around the time I do my cat scans.
Have issues but who does not.
I do wonder why my Oncologist never followed up with rituxin. Not that I want it.
But it makes me wonder.
Yes we still can count our blessings for sure.
It just is hard when you have added problems.
I wish you and your wife well. I was just so happy to see that you are doing well.
I suppose because I dont see too many people who have done the Zevalin. And sometimes I also wonder what the end results will be with that also.
Anyway I wish you well and lets hear from you once in a while to see how you and your wife are doing. God Bless you, you

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