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Ofatumumab

onlytoday's picture
onlytoday
Posts: 583
Joined: Jun 2010

Hi all,

I hope that you all know what this sight and your support mean to me. Everyone of you is so special to me and I thank you.

Waiting for a phone call from the hospital in Philly. Getting admitted tomorrow for an all day infusion of Ofatumumab. This will be a test run to see how well I tolerate it. This is an antibody - similar to Rituxan but made from human antibody not murine. (mouse) Due to a severe allergic reaction to Rituxan I can't have that again so my onc thinks this is a great option. Newly approved for use with NHL. Today my pre-meds are....wait for it....prednisone!! Of course! So I'll be running around cleaning the house all day and will be up all night if anyone wants to post later! :)

Anything to make a longer Remission !!!

Prayers accepted. And right back at ya!

Hugs,
Donna

jimwins's picture
jimwins
Posts: 1970
Joined: Aug 2011

Hey Donna,

Good luck with the "mouseless" antibody. LOL - yeah I should have
done more house cleaning when I was on the prednisone. Really need
to clean now but can I say, "I'm not in the mood?" ☺.

Keep us posted.

Sending you warm hugs and positive thoughts/energy,

Jim

allmost60's picture
allmost60
Posts: 3147
Joined: Jul 2010

Hi Donna,
UGH!...the nasty pred! We need to remember as bad as the pred is and all of it's crazy side effects, it does keep our organs from swelling and plays an important role in our treatment plan. Easy for me to say since I'm not the one taking it, but it's true. I'll be up tonight..(no Lizzy tomorrow)...so I'll keep checking to see if your needing some support. Man...I remember those long sleepless nights from the pred all to well! My prayers and positive thoughts are coming your way dear Donna! Love you...Sue
(FNHL-2-3A-6/10)

po18guy
Posts: 237
Joined: Nov 2011

Prayers for you, Donna. May there be that single less factor in it which will allow your body to tolerate the treatment. Amen.

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Donna,
The one thing about The Big P is it taught me to dance. Remember Lionel Ritchies "Dancing on the Ceiling". LOL.... John

anliperez915's picture
anliperez915
Posts: 739
Joined: Sep 2011

Hi Donna,
Mouse or no mouse, We'll do just about anything to reach remission and stay there for a while. I will keep you along with many others here in the group in my prayers! As soon as you feel up to it, please let us know how it went. (((Hugs)))

Sincerely,
Liz

miss maggie
Posts: 929
Joined: Mar 2010

Dear Donna,

When you feel up to it, let us know how you did with your new treatment.

I must be a rare bird. I had prednisone with my treatment of Rituxan back in
Dec 2009. I had no side effects what so ever. Perhaps, because I had treatment
only once weekly for 4 weeks. That must be it. Anyway, I have asthma caused by
so many allergies. When it gets bad, my doctor puts me on prednisone. I usually
start with a higher dose, then slowly dose is reduced. That's when the prednisone
hits me. Depression first, jittery and feeling horrible. To all of you, I understand
when your reaction is not tolerable.

Prayers for you and hope this new treatment works well for you.

Stay positive, you are always in my thoughts. Love Maggie

onlytoday's picture
onlytoday
Posts: 583
Joined: Jun 2010

Hi everyone,

I'm in the hospital, have a lovely room with a view. Getting saline now. Pre-meds in a bit. They probably won't start the infusion until 4pm! Ugh. Want this over with. But on the other hand.... I really have nothing else going on today! he he

And I have the huge benefit of having the Olympics to watch while I'm hanging around here!

Thank you for all of your good wishes, love and hugs. Means SO much to me.

I'll keep you posted with how this goes. Praying hard that this works with limited side effects. I really am craving a llllllooonnnnngggg remission. I'm tired of getting stuck already!

And of course I am wishing the same for all of you!

Once I'm done in October and I'm feeling stronger and ready I plan to try my best to get involved with serious fund raising for Lymphoma Research. Do you all think the Leukemia/Lymphoma Society is the best way to go or directly to the American Cancer Society. I know there is also another lymphoma Society that says they are the biggest research facility for Lymphoma. I doubt if there is a bad choice- just wondering what ya all think.

Thank you my friends.
Love and hugs,
Donna

onlytoday's picture
onlytoday
Posts: 583
Joined: Jun 2010

Hi all,

I'm really bummed. Had hives all day and night from the infusion of Ofatumumab. They finally stopped the whole thing at 10:30 pm. I won't know until the doctors come in what they plan to do today. Right now I'm just getting saline. Still breaking out this morning a bit.
Only had slight throat involvement in the very begging yesterday afternoon. A couple of shots of benedryl and that stopped and hasn't come back. That was the only time I got scared- it reminded me of my non-friend the mouse aka Rituxan.

So they are weighing the benefits to the risk. If I'm just going to be an itchy mess so be it. I'll take that if they let me. They had to run it so slow though that they had to throw out all but 100 cc of 1000 cc bag. That's not cool - very expensive waste. The other thing is that at that slow drip rate the Ofa expires way before the infusion would be done.maybe they could do 2 smaller bags over a long period of time.

So anyway I'll know more later. Thanks for for listening. I rarely get that upset but this really has given me a few moments. Between not sleeping, getting hives, scratching, getting prednisone and benedryl to the max- I have had better days.

Just call me Spot.

Love ya,hugs and blessings,

Donna

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Sorry to hear about all the bad reactions from your treatment, it's always something! Hopefully they will figure out the right dosing for you.... hang in there Donna ... Vinny

jimwins's picture
jimwins
Posts: 1970
Joined: Aug 2011

Hi Donna,

Hopefully they can figure something out for you.
Sorry you're having this issue. Please keep us posted.

Hugs,

Jim

onlytoday's picture
onlytoday
Posts: 583
Joined: Jun 2010

What a day!! After being told almost for sure that the infusion would not be re-done, a reversal happened in a meeting of the oncologists! Not only did I have it but it's done. We ran it at the normal recommended speed (speeding it up all day).It seems that I became de-sensitised to the drug yesterday with that big mess. Minimal side effects! I am so happy I'm crying! The nurses were just in my room celebrating with me. We danced!

This is going to have such a positive outcome on my ultimate Remission and long term response.Wow! So the plan is for me to go home tomorrow as long as tonight remains uneventful and my blood work looks good. My next infusion will be Tuesday and Wednesday. Supposed to get the Ofatumumab Tuesday but they may wait and admit me for that part a week later. To be determined.

Thank you for all of your love, support and your listening ears. Good times and bad I know that you guys are there for me. And I for you!

I hate it so much that we even have to be on this site. But if I have to be here I'm glad it's with you all.

Thanks,hugs, and I pray for good news for all of you. And if that isn't happening for you today, please share some of mine.

Love,
Donna

jimwins's picture
jimwins
Posts: 1970
Joined: Aug 2011

Hey Spot-Donna,

That is great news, Donna!

I'm so happy for you :).

Hugs,

Jim

anliperez915's picture
anliperez915
Posts: 739
Joined: Sep 2011

Wonderful News Donna aka Spot!!! Sweetie I'm really happy that you were able to finish that medicine. Really praying that you finally reach remission and you stay there forever!!!
Many Many Hugs dear Donna (Spotty) lol!!!

Sincerely,
Liz

allmost60's picture
allmost60
Posts: 3147
Joined: Jul 2010

Hi Donna,
Fantastic news! Things are finally looking up for you! You will feel even better to get home and away from the hospital...I just hate going to the hospital! I'll keep checking in next week to see how things are going with you. Much love...Sue
(FNHL-2-3A-6/10)

miss maggie
Posts: 929
Joined: Mar 2010

Donna, It is great reading your post and how positive you've become.

I will continue to think of you always. Love Maggie

onlytoday's picture
onlytoday
Posts: 583
Joined: Jun 2010

Hi all,

Well had more bendamustine yesterday and back at the infusion center for more bendamustine today. And- then.... yes more Ofatmumab! We are trying it in the infusion center- my nurses ( i now have 2) have me right at the nurses station in case I decide to act out again! ha!

It takes many hours and I may 1. run out of time and get moved to the hospital to finish the infusion (the center closes at 7pm) 2. Get "Spotty" again- and just need drugs here to handle it 3. Get extremely spotty again and get admitted.

I am not at all concerned about me today. I do get concerned about my family- this is stressful. For me I know that I am getting the best of care and I'm simply not stressed. ( and no it's not the drugs talking!!Haven't had the good stuff yet )

I met with my Pastor yesterday and I told her that this journey has turned into a big test of my patience and flexibility. It truly has. I apparently have much to learn in these areas.

Oh and had a doc appt yesterday. My IGM has not usually been below 1800 since this journey started. (normal is around 250) Yesterday my IGM was 400!!!!! So whatever we are doing is really working on my disease! My reg blood work was beautiful too. :)

So Thanks for listening! I will keep you posted on my possible "Spotiness"..

See Spot run... to Remission,

Hugs and prayers to all,
Donna

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

Donna , I am so glad you are able to tolerate the new med. Keep your chin up. Rely on God's strength. Take care . Love Joanie

miss maggie
Posts: 929
Joined: Mar 2010

Dear Donna,

I am so happy you are able to tolerate the 2 new chemo treatments. And it
seems to be working. YEH

Your message and thoughts from this post sounds so much more positive. I am
so glad you are feeling better mentally.

Always with you on this journey. Love Maggie

jimwins's picture
jimwins
Posts: 1970
Joined: Aug 2011

See Spot run. Run Spot! Run!

Such wonderful news, Donna! "Spot on!"

Good news is always great and hits the "spot"!

Ok, too much use of the word - I'm starting to see
"spots" before my eyes ;).

Hugs and happiness,

Jim

onlytoday's picture
onlytoday
Posts: 583
Joined: Jun 2010

Hi all!!

Well I'll be.... didn't have ANY reaction to either drug yesterday. They gave me my regular
chemo first and the topped it off with hours of the full dose of Ofatumumab! I had zero reactions from either one! When home last night (no Jefferson Hospital for me!) Had a lot of heartburn and an upset stomach (the drugs just weren't quite controlling it.) I'm also understandably very tired. BUT- today I am sitting out in my backyard, watching the birds-and feeling fine. Just a red neck and face- and fatigue. I am a blessed woman!

So I think the spotty me ran away. But I don't thing it would be appropriate to call me "REd Neck" So I think I'll just be Blessed today!

Thank you all my angels. I know I've got the best doctors and medical team and in addition I have a cast of many angels here on earth helping me through this. (That includes all of you)

I am constantly praying for all of you as we fight this dreaded disease. Words don't come in an appropriate way to explain my gratitude to have you all there for me.

Love and Hugs,

Donna

forme's picture
forme
Posts: 1157
Joined: Aug 2010

Hi Donna

Best news. This is how it should be. Smooth sailing through treatments.
Enjoy sitting in your yard and just being outside and alive!

Sending you huge hugs as you rest and recover.

Lisha

miss maggie
Posts: 929
Joined: Mar 2010

Where did my post go????

Anyway, I just read your second positive post. YEH/

I was glad to read you are doing so well with the 2 chemo's. Just being tired sounds
so like a blessing. I hope this new treatment will bring you to remission.

Please be careful in the sun outside. Use a huge umbrella to shade you. Being outside
and seeing all around you is a good thing.

Thinking of you my friend. Love you Maggie

onlytoday's picture
onlytoday
Posts: 583
Joined: Jun 2010

Thanks for the posts! Yes I am under umbrellas and trees. Fabulous. Just took a 4 hour nap! hehe

Thank you everyone for you love and support. I will write more later and inquire about you all.

Love and prayers,

Donna

onlytoday's picture
onlytoday
Posts: 583
Joined: Jun 2010

Thanks for the posts! Yes I am under umbrellas and trees. Fabulous. Just took a 4 hour nap! hehe

Thank you everyone for you love and support. I will write more later and inquire about you all.

Love and prayers,

Donna

allmost60's picture
allmost60
Posts: 3147
Joined: Jul 2010

Hi Donna,
I'm so happy to hear the last treatment went well with no reactions...."YEAH"!I've gotten too much sun yesterday and today in the boat and developed a irritating rash on my arms, legs and chest. So...no fishing or sun for me until Monday. Been taking benedryl and using a medicated lotion which is helping...I guess Rituxan and sun isn't a good mix. I called my doctor today and he said to keep covered up while in the sun. Anyways...staying in is ok with me, the view alone from our living room is enough to keep me happy! You rest and take care of yourself. Much love...Sue
(FNHL-2-3a-6/10)

onlytoday's picture
onlytoday
Posts: 583
Joined: Jun 2010

Hi,

Yes I am staying away from the sun. My red neck and face are from the drugs. I think it's the bendamustine. It seems to be fading a bit today. I am also holding about 7 pounds of water weight still- but it will pass.

I am so relieved. So happy.

So now I can get off of me and listen to you all and send support to you!

Sue I'm glad you can enjoy the summer and just enjoy the view. We are truly blessed.

Love and hugs to all,
Donna

onlytoday's picture
onlytoday
Posts: 583
Joined: Jun 2010

Hi,

Yes I am staying away from the sun. My red neck and face are from the drugs. I think it's the bendamustine. It seems to be fading a bit today. I am also holding about 7 pounds of water weight still- but it will pass.

I am so relieved. So happy.

So now I can get off of me and listen to you all and send support to you!

Sue I'm glad you can enjoy the summer and just enjoy the view. We are truly blessed.

Love and hugs to all,
Donna

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