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So far so good!

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

Hello to all and hope this finds everyone staying positive,
I had my bone marrow biopsy last weds. and that went fairly well.I was glad because the one before was not so good. I got the call yesterday from my MD who told me the bone marrow was completely clear. I was stunned as I had 50% bone marrow involvement when I was diagnosed with my Grade 1-2 stage 4 FNHL. Now that leaves me cancer free with a clean PET scan also. So now it's on to the Zevalin treatment beginning on April 6Th! I am apprehensive but hopeful. It seems like there is very little time to enjoy one success before it's onto the next scary thing. Hopefully after the Zevalin and it's recovery things will calm down. I know I have been fortunate so far and thank God and great care for that. Again I hope all is well for everyone.
Mary

miss maggie
Posts: 929
Joined: Mar 2010

Mary, what wonderful news about your bone marrow test. If everything is clear, why are you having zevalin treatment?

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

As I understand it Zevalin is now also being used in ppl who have achieved a complete remission. It goes in and cleans up any possible leftovers that may cause a recurrence thereby extending the remission longer. I hope that will be the case for me. Now I just have to get through it.

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Thanks Mary for sharing your wonderful news . I am so happy for you. God bless you and your family. Joanie

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

Thank you and thank you also for remembering my family. Sometimes I can't decide who this is harder on. My family has been great and each of them have their own things going on but always make me feel well cared for. My oldest daughter is expecting twin girls shortly and I thank God every day for the joy this has brought me. I have much to stick around for.
Mary

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

What a wonderful blessing. I have a 8 year old grandson and a 6 year old grandaughter. Are these your first

Tracie1981's picture
Tracie1981
Posts: 125
Joined: Mar 2010

I just wanted to say congratulations on the wonderful news about the PET scan and about twin girls!! Wow! I hope everything works out well with the treatments and Congrats again and God Bless!

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

Thank you so much Tracie and I hope all goes well for you. It's definitely an eventful journey for us all and all we can do is our best. We don't have to like it but since we all find ourselves at this spot have no choice but to deal with it. In my case the upcoming twin girls make me realize that life continues in spite of this disease and I am needed here. I see you have a little one or ones yourself so I know how you must feel. But stay strong and things do have a way of working out. I can hardly wait for the time when this illness takes a backseat and doesn't require so much of my time and thoughts. I have four children all at various stages of finding their way through life and I will do everything in my power to make sure they have my help,love and support. Good luck to you.
Mary

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

My first oncologist that I fired did not give me a BMB. I had Follicular NHL Stage 3A. My new oncologist ,that is great, said he should have given me one before my chemo last year. My question is, do they numb you or is the pain horrible and can they tell if you have bone marrow involvement from a PET scan. I am feeling fine except for itching and I am praying it is not the NHL returning. I have been cancer free since June 2009. I am currently on Rituxin and I know it says itching as a side effect but it is usually at infusion. I am going to the Dr on the 14th. Thanks for all you input

catwink22's picture
catwink22
Posts: 281
Joined: Sep 2009

Hi Joanie! I also have FNHL Stage 3 and am currently on Rituxin, but I did not receive chemo. My onc did a BMB on me in her office and gave me LOTS of shots of Lydocaine, but I still found it extremely painful and I was down and out the day after. Some people breeze through it with no pain or issues, so keep in mind your own threshold for pain. My personal opinion is I would never have the proceedure done again without stronger pain management. My biopsy came back clear :>) and that was a huge relief so I don't regret having it done I just wish I had been better prepared. I wish you the best of luck with all of it! Cat

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

That is so great catwink that your BMB was clear. What a blessing. How are you feeling? What side effects if any do you have from Rituxin. My next infusion is April 14th. I wonder if he will still do it if I tell him about the itching. I have warm times during the day and night but if they are night sweats at night they are extremely mild. I have had these warm times and was having chills before and after my clear PET scan. Take care.

catwink22's picture
catwink22
Posts: 281
Joined: Sep 2009

I have my third infusion tomorrow - one more to go, phew! I don't have any itching, mostly I feel pretty good, thank you for asking! Maybe something else they are giving you with the Rituxin is making you itch? Are they giving you steroids or demoral? I only had the BMB on one side, my onc told me if she can't get a good enough sample from one side she would have to do the other too. Maybe that's why some had two sides? Can you call your infusion nurse or onc? It could be an easy fix with some benadryl or lotion. Good Luck Joanie!

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

No they cannot tell if it's in the bone marrow on a PET scan. I asked my MD the same thing. It sure would be nice if they could!! I wad put lightly under for it and don't remember anything. My MD said he puts all of his lymphoma patients asleep for it because they have to take it from both sides of the back of the pelvis. Afterwards you have a sore back for a couple of days but it wasn't too bad at all. Hope all goes well and keep us posted. Mary

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Thank you for the comments. My doctor has not mentioned giving me one. The pollen is horrible in my front yard in Florida so I am hopng the itching is related or to the rituxin. It is horrible to have become a paranoid person. I appreciate this site and the people I have connected with so much.

yesyes2
Posts: 592
Joined: Jul 2009

Hi Joanie,
When I had my first diagnois of lymphoma my onc asked if I wanted a BMB. I said no, he asked my reasons. I said if it was in the bone marrow the chemo would kill the cancer anyway and I was concerned about the pain, so no bmb was done. When I recurred last June I asked for a BMB, which came back clean. I was numbed, had awake sedation, but not enough as I felt it way more than I thought I would. It hurt all the way from my hip down to my toes. I had my port put in with the same meds and felt nothing. It was my onc's partner who did the BMB, big mistake on my part. Any way, I told my onc.....NEVER AGAIN!!!

As for itching and Rituxin I believe that is only during infusion if you are having an allergic reaction. I sometimes have itching because of dry skin. Could that be your problem too?
Leslie

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

I hope the dry skin is the reason. Before and after my PET scan which was clear and after rituxin I have experienced chills, and warm times. The chills are finally better about 10 weeks after infusion of rituxin. I still have warm times, day and nght. Not menapause as I am 62. I am going to question my Dr if he thinks the rituxin is working ? I hate thinking about myself so much

hilde451's picture
hilde451
Posts: 229
Joined: Oct 2009

Hi Mary: They call Zevalin and insurance so they can keep it in remission longer. I did mine Dec, 23rd. So hopefully it will stay in remission. I have a cat scan June 2nd.
I did have a pet scan March 17 th and it went well.
I was wondering about the bmb , my dr did my first one on both sides and there after only on one side. I am wondering why that is?
I guess I will have to find that out. I am also wondering if they do another bmb after the zevalin has taken hold. Just curious.
I will write that down for a question when I go to see him June 9 th.
I wish you well. Hilde

yesyes2
Posts: 592
Joined: Jul 2009

Hi Hilde.
When I had my BMB the onc only did 1 side. Wonder why some do both sides and some do only one side. Mary, do you know why? Really makes no sense to me. Sort of like some oncs are still doing 8 CHOP treatments although the new thinking is to do only 6 cycles. Go figure.
Leslie

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

All I was ever told was that for Lymphoma we do both sides and both biopsies I've had they did both. I remember asking before the last one jokingly if he could just do one side so I would be left with one good side and he laughed and said no!! I'm just lucky I guess.Sorry to hear you felt anything during the procedure. I remember absolutely nothing. That really was lucky. I just got back from my first step in the Zevalin chapter. They ran the Rituxan first and then gave me the tracer dose of Zevalin. Two hours later I had a scan and will return for another scan on Friday. All went well so far. I had no reaction to the Rituxan or the Zevalin at the time of infusion. I just hope it stays that way. Hope all is well with all of you....Mary

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