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Dougie and Rituximab

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12 years 8 months ago #30097 by alisonp
Dougie and Rituximab was created by alisonp
Just thought I would report back on the non-eventfulness of Dougie's first treatment.

Apart from the fact that he had a very low heart rate (no idea why) which meant that the treatment nearly didn't go ahead, the first one was totally non-eventful. No reactions, no nothing. It took about 6.5 hours in total, but the nurse said that the next ones would be quicker.

The only thing he has said today is that his sense of taste is different but in a good way. He described it as food "tasting more". I thought he was imagining this, but I just googled it and an "altered sense of taste" is a listed side effect, so I guess not!

If thats the only side effect, its got to be positive. Just hoping it actually works on his platelets now! :)

Ali
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 8 months ago #30105 by Sandi
Replied by Sandi on topic Dougie and Rituximab
That's great, Alison! The next three should go even better. Now time to cross the fingers that it works!
The following user(s) said Thank You: Vdeutsch85
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12 years 8 months ago #30167 by alisonp
Replied by alisonp on topic Dougie and Rituximab
Thanks Sandi

Treatment #2 was even more uneventful today and also much faster - only about 2 hours transfusion time.

Didn't get a count today but I think they said that if his count was up next week they might not do the other two transfusions? Don't know if I heard this right though.

He is looking good though (no bruises, no petechiae), so fingers crossed it is working :)

Ali
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12 years 8 months ago #30174 by crystal lee
Replied by crystal lee on topic Dougie and Rituximab
Good news!! :)
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12 years 8 months ago #30212 by lamonica
Replied by lamonica on topic Dougie and Rituximab
Ali,
I'm so glad to hear Dougie's treatments are going well! I wonder if the enhanced taste will help him eat more veggies, or have the opposite response?! ;)

Blessings!
LaMonica
mom to Camden (12)
LaMonica
Mom to Camden (13yrs) diagnosed 6/09
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12 years 8 months ago #30215 by BethF
Replied by BethF on topic Dougie and Rituximab
I'm glad that Dougie is looking good and that the treatments have been uneventful for the most part. Let us know when you get a platelet count - hoping for high numbers for him!
Beth - mom to Brady (age 19, diagnosed 1/18/02) and Matthew (age 21)
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12 years 8 months ago #30283 by crystal lee
Replied by crystal lee on topic Dougie and Rituximab
Hey

How are things going?..Think about you often, Dougie has had ITP 3.5 years?? I really hope this is the long-term even forever answer, he so very much deserves it!
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12 years 8 months ago #30290 by alisonp
Replied by alisonp on topic Dougie and Rituximab
Hi Crystal

Thanks. I am feeling cautious but very positive about this.

Dougie's platelet count last week (after one treatment) was an unbelieveable 72!!! This week before treatment #3, it was lower, but still an amazing 51. On the basis That it had gone down a bit, the doctor has decided to do the last two treatments. But it looks like it might be working....

Rituximab is nothing like IVIg, no headaches, no sickness. Its been a really easy treatment so far. Dougie is tired, but its not stopping him doing things, he still says his sense of taste has changed but not in a bad way, and he is a bit achy - but that might equally be attributable to the sledging he did at the weekend! His lymphocytes are very low, but the doctor thinks that should recover quickly when the IVs stop.

So all in all, still good!!!

Ali :)
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12 years 8 months ago #30296 by milly
Replied by milly on topic Dougie and Rituximab
Ali, just wanted to say I am so happy for Dougie....It sure has been a long trip for him and this seems to be doing good.
There is no practice run in life.
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12 years 8 months ago #30442 by alisonp
Replied by alisonp on topic Dougie and Rituximab
Good thing about today - treatment #4 is finished, no more hospital!

Less good thing about today - count was down again to 31. But I am not giving up hope!!! Going to wait the full 6 weeks from now with an open mind and see what it brings. The Dr still seems optimistic. And as both Dougie and the Dr pointed out today, Dougie would consider a consistent 30 or 40 an absolute success - who needs normal?

I am wondering whether the past couple of weeks have been due to the mega dose of hydrocortisone that they gave him with the rituximab. Has anyone else had this pattern? (followed hopefully by a massive rise!)

All the best, Ali :)
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12 years 7 months ago #30831 by alisonp
Replied by alisonp on topic Dougie and Rituximab
Three weeks on and Dougie's count today was 33 - definitely a result in terms of his usual count, so I hope it stays there. The doctor said counts can keep rising for about 6 weeks after the last dose, so when we go back in a month, it will be interesting to see what his count is. Dougie meanwhile is planning to celebrate a safe count with a whole load of unsafe activitites this week as he is on half term holiday ;)
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12 years 6 months ago #31570 by alisonp
Replied by alisonp on topic Dougie and Rituximab
Nearly two months in, and Dougie's count today was 30. It might not sound like much, but as the doctor pointed out, its almost triple his normal level. And more importantly, it takes him from unsafe to safe(ish). Result, I think!!!!!
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12 years 6 months ago #31601 by crystal lee
Replied by crystal lee on topic Dougie and Rituximab
Happy he is at a safer number..He really deserves it..Hopefully it will climb :)
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12 years 6 months ago #31618 by firkins
Replied by firkins on topic Dougie and Rituximab
This is GREAT NEWS! It's clearly not the prednisone keeping the levels up at this point so it's all Dougie now. So glad he is in the safe/safe'ish zone and hope he does lots of sports. xxoo Firkins
Firkins (mom of Zoe (15) and Mia (13). Mia has ITP. Diagnosed 3/2012.
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12 years 5 months ago #32174 by alisonp
Replied by alisonp on topic Dougie and Rituximab
Dougie has had three weeks now with absolutely NO symptoms!!! I am thinking rituximab has maybe finally started working well. I may even be tempted to take him for a count soon if this keeps up..........
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12 years 5 months ago #32175 by firkins
Replied by firkins on topic Dougie and Rituximab
Ali -- this is the MOST FABULOUS news! I actually woke up thinking about you and wondering how Dougie was. Sorry I've been so out of touch.

This is GREAT -- do you mean no bruising at all? I love this and can see in my mind's eye Dougie doing all sorts of rough sports and daredevil things. Makes me thrilled to hear. Best news.

Mia is also doing well -- including (I guess I can post this since she will never see it!) -- getting her first period which, while she bled quite a long time -- was FINE. SO happy she had the rituxan before that began.

Be well. Hope spring comes to England. I'm not sure it's ever coming to Boston, although we are all healing here and slowly moving on. xo Firkins
Firkins (mom of Zoe (15) and Mia (13). Mia has ITP. Diagnosed 3/2012.
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12 years 5 months ago #32230 by alisonp
Replied by alisonp on topic Dougie and Rituximab
Good to hear that Mia is still doing good. Spring has finally sprung here, although its still pretty cold.

I meant no petechiae on Dougie's legs really - he hasn't had any bruises since about Christmas. Given the state of my eyesight, its possible I just need to look using my reading glasses, but ignorance is bliss eh! ITP is fast retreating to the back of Dougie's consciousness, and you are right that he is indulging in all things dangerous.........and its great to be able to let him go without worrying about sodding platelets!
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12 years 4 months ago #33248 by alisonp
Replied by alisonp on topic Dougie and Rituximab
After a ery welcome break since January, I've been thinking that rituximab has stopped doing anything for Dougie now. He had a ridiculously tired and bruised week a few weeks ago, and he's looking that way again at the moment. I think his count is probably back in the teens. His next appointment isn't until the end of September and I am wondering whether or not there is any point in getting a count before then? On the whole, I am thinking that I won't bother, because its not as if its going to chabge his count or (non)treatment.

Oh well, it was good while it lasted :silly:
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