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4 rounds of Rituxan and 3 to go

DeeDee Marie
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13 years 3 months ago #26184 by DeeDee Marie

Replied by DeeDee Marie on topic Re: 4 rounds of Rituxan and 3 to go

That will be great when the time comes that generic are available. This will help a lot of the younger folks.

amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

13 years 3 months ago #26373 by amberyard

Replied by amberyard on topic Re: 4 rounds of Rituxan and 3 to go

Friday my count was at 63000. Recheck on 9/19 and another round of Rituxan is planned, which then total I'll have 9 rounds. Still don't have an official diagnosis, so I may not have ITP, but he did talk about last result would to take my spleen out. Its a waiting game and i'm a very patience person but I want to know whats wrong so I can move on in my life or make changes.

The following user(s) said Thank You: Theresa

Dean
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13 years 3 months ago #26399 by Dean

Replied by Dean on topic Re: 4 rounds of Rituxan and 3 to go

ITP is a diagnosis. It means they cannot find a reason for low Platelets. 9 rounds!!! Does your Dr feel the more he gives you the better the chance you will respond???? That is not the case with Rituxian. In my opinion your Dr is OVER TREATING you!!!

Ann
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13 years 3 months ago - 13 years 3 months ago #26414 by Ann

Replied by Ann on topic Re: 4 rounds of Rituxan and 3 to go

Rituxan kills off the B cells. Once they are gone they are gone for a year or so therefore keep giving more is pointless as there's nothing left for it to do. Have you discussed with the doctor? What did he say?

amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

13 years 3 months ago #26423 by amberyard

Replied by amberyard on topic Re: 4 rounds of Rituxan and 3 to go

From everything I have read, it looks like my doctor is treating me for NHL. I have not official been diagnosed with anything yet. Also from what I have read I can't get official diagnoses until 6 months into having platelet problems. All my symptoms point to NHL.

amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

13 years 3 months ago #26424 by amberyard

Replied by amberyard on topic Re: 4 rounds of Rituxan and 3 to go

RITUXAN DOSING BY TREATMENT SETTING1

www.rituxan.com/hem/hcp/images/figures/dosing/nhl-dosing-7.gif

eklein
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13 years 3 months ago #26426 by eklein

Replied by eklein on topic Re: 4 rounds of Rituxan and 3 to go

Yes I agree your doctor is using a treatment protocol more appropriate to NHL than for ITP. But can't they rule out NHL with other tests?
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

Ann
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13 years 3 months ago #26431 by Ann

Replied by Ann on topic Re: 4 rounds of Rituxan and 3 to go

I can't imagine a doctor would treat for NHL if he wasn't sure of a diagnosis. And what about CT scans or MRI scans for staging purposes? They dont just treat with high dose rituximab just in case.. or at least one would hope not. And why do they have to wait for 6 months? I was diagnosed with ITP from day one.

amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

13 years 3 months ago #26493 by amberyard

Replied by amberyard on topic Re: 4 rounds of Rituxan and 3 to go

I have had a CT and bone marrow test. They came back clear other than I had a spot on my lungs. They can not make an official diagnoses of ITP until 6 months due to the fact, at that point they don't know if its going to be acute or chronic. The only way the can tell if its chronic is after 6 months, then they can do an official diagnoses.

eklein
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13 years 3 months ago #26494 by eklein

Replied by eklein on topic Re: 4 rounds of Rituxan and 3 to go

But they ruled out NHL and are only deciding between variations of an ITP diagnosis. ITP is called a diagnosis of exclusion, it is used when other explanations have been ruled out. So why is your doctor treating you with an NHL protocol?
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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

13 years 3 months ago #26505 by Sandi

Replied by Sandi on topic Re: 4 rounds of Rituxan and 3 to go

It does not take six months to get an ITP diagnosis. You don't have to wait until it can be considered chronic. Chronic just means that you've had it longer than six to twelve months.

Something really smells fishy here....

amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

13 years 2 months ago #26521 by amberyard

Replied by amberyard on topic Re: 4 rounds of Rituxan and 3 to go

I guess this is what happens when you don't have health insurance .No one else is will to work with me since I'm over $150,000 in medical bills with the hospital and the oncologist. I also got sick and tried of my hair coming out so I shaved my head last night with my husband. I'm at the point of just not going to the doctor anymore!!

(

eklein
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13 years 2 months ago #26522 by eklein

Replied by eklein on topic Re: 4 rounds of Rituxan and 3 to go

How's it look? Can you post a picture? Get some radical earrings!
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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

13 years 2 months ago #26525 by Sandi

Replied by Sandi on topic Re: 4 rounds of Rituxan and 3 to go

Amber - I wouldn't stop going to the doctor. You just need to take control of this situation and start asking questions. Seems like you are wracking up medical bills and side effects that may not be necessary.

Why are you losing hair?

DeeDee Marie
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13 years 2 months ago #26527 by DeeDee Marie

Replied by DeeDee Marie on topic Re: 4 rounds of Rituxan and 3 to go

Amber,
I lost a lot of my hair, too (mostly in front and top area). It's enough where I can't really fix it decent and its a little frizzy. So, I mostly where a wig. But I'm older than you, so I figure its the minor of my worries.

Don't give up. Try to figure what's going on. And, there are ways you can get help with the medical bills. You just need to look into it.

DeeDee

KittieG
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13 years 2 months ago #26889 by KittieG

Replied by KittieG on topic 4 rounds of Rituxan and 3 to go

Anyone heard from Amber? I was wondering if she kept going and got the full 7 doses of rituxan or not.

DeeDee Marie
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13 years 2 months ago #26893 by DeeDee Marie

Replied by DeeDee Marie on topic 4 rounds of Rituxan and 3 to go

Hi Kittie,
I don't think she's posted since July 30. Not sure what happened unless she emailed someone.

Dean
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13 years 2 months ago #26898 by Dean

Replied by Dean on topic 4 rounds of Rituxan and 3 to go

Hope everything is OK!!!

DeeDee Marie
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13 years 2 months ago #26900 by DeeDee Marie

Replied by DeeDee Marie on topic 4 rounds of Rituxan and 3 to go

Amber,
We are all hoping you are okay. Our thoughts and prayers are with you. Please let us know how
you are doing!! Sometimes life can be very terrifying--but just know that there are those that care.

amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

13 years 2 months ago #26908 by amberyard

Replied by amberyard on topic 4 rounds of Rituxan and 3 to go

Just been very busy and don't have internet at the house. I have my good days and bad days. I got 8 rounds (63000) and go back 9/19 for a recheck and another round, but don't know if the other round is going to be Rituxan he may try a different drug. I can tell when my platelets are down, just like yesterday I had no energy and just wanted to sleep. Today woke up like I had 6 cokes, but I know by the time I get home and eat dinner I'll be asleep by 9pm.

DeeDee Marie
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13 years 2 months ago #26911 by DeeDee Marie

Replied by DeeDee Marie on topic 4 rounds of Rituxan and 3 to go

Amber,
Sorry that you are feeling so bad. I know it's depressing when you have to go through all of this. Try to hang in there and still be an advocate for your treatment (don't just let the doctor do anything he wants--it's your body).

I also know you don't want to hear this right now, but drinking 6 cokes is not good for your body and stomach. Maybe a little coffee might be a little better? Are you looking for some extra energy? What are other's thoughts on this? Getting that extra energy?

amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

13 years 2 months ago #26912 by amberyard

Replied by amberyard on topic 4 rounds of Rituxan and 3 to go

The thing is I didn't drink any cokes and that's how I feel today, I try not to drink any caffeine. But on good days that's how I feel like I had way to much caffeine.

DeeDee Marie
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13 years 2 months ago #26913 by DeeDee Marie

Replied by DeeDee Marie on topic 4 rounds of Rituxan and 3 to go

I'm sorry, Amber, I read your post wrong. You mean that you have a lot of energy when you wake up and it just fizzles out by the end of the day. I feel that way, too. And, sometimes I start the day feeling tired when I wake up. I think it's a combination of the meds and having ITP.

I've never had the same energy level that I had before I came down with ITP. I look back and wish that I could get back some of that energy!

kimmieko22
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13 years 1 month ago #27329 by kimmieko22

Replied by kimmieko22 on topic 4 rounds of Rituxan and 3 to go

Hi Amber I hope that you are doing better. I found that orange juice gives me the energy I need on bad days. If your on prednisone you must be careful do to it can raise your heart rate and mixed with coke or coffee it can be dangerous. And the question I had is rituximad is not supposed to cause hair lose so why are you losing your hair. I did 8 rounds my self and did not work for me and will be repeating it in 2 weeks. I wish you luck and hope you feel better soon.

Dean
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13 years 1 month ago #27332 by Dean

Replied by Dean on topic 4 rounds of Rituxan and 3 to go

Wondering if any of you have tried 5 hour energy?

amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

13 years 1 month ago #27345 by amberyard

Replied by amberyard on topic 4 rounds of Rituxan and 3 to go

The Rituxan can make your hair thin and have more dead loss. My hair was starting to get really ratty looking so I just shaved it and when I'm done with my treatments I'll grow it back out.

eklein
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13 years 1 month ago #27346 by eklein

Replied by eklein on topic 4 rounds of Rituxan and 3 to go

Amber,
You look really cool, I wish I could carry off that look. Hey - now is the time for a scalp tattoo!
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

13 years 1 month ago #27349 by amberyard

Replied by amberyard on topic 4 rounds of Rituxan and 3 to go

I have lots of tattoos but will have to wait until my count is somewhat stable to get any more work done. But already thought about that....lol Yeah I shaved my head a couple of years ago from dying it and a bad hair cut....

amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

13 years 1 month ago #27350 by amberyard

Replied by amberyard on topic 4 rounds of Rituxan and 3 to go

kimmieko22

did you have your 8 treatments one week after the other?

I had 8 treatments one week after the other and he gave me 2 months off going back 9/19 for recheck and another round.

amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

13 years 1 month ago #27355 by amberyard

Replied by amberyard on topic 4 rounds of Rituxan and 3 to go

Shaved it all off and going to keep it shaved until I'm done with treatments. I got tired of going through lots of vacuum bags and clogging the tub up.. The photo in my profile was taken yesterday.

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