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HELP

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13 years 10 months ago #25244 by kathylou11
HELP was created by kathylou11
My daughter is 22 years old & was diagnosed March 2012. She has been on steroids, has had IVIG 4 times, platelet transfusion 3 times & a splenectomy 2 1/2 weeks ago. The first week after surgery her count was 296,000 & this week it was 61,000 on Wed, then on 3,000 on Friday. Friday she had another round of IVIG & platelet transfusion. Monday she is going back to get rechecked & the dr wants to start rituxin & Nplate. Do we need to get a 2nd opinion? Dr said her spleen was high potency of ITP. Please we would love to have advise.

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  • 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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13 years 10 months ago #25245 by Sandi
Replied by Sandi on topic Re: HELP
Kathy - she is getting hit with a lot of treatments at once. That can be tough. Did steroids work at all for her?

Some doctors tend to think that splenectomies work more often than they actually do. At this point, you need to be a bit cautious about immunosuppression and the possibility of blood clots. A second opinion couldn't hurt.

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13 years 10 months ago #25246 by Ann
Replied by Ann on topic Re: HELP
Any doctor who uses platelet transfusions when there isn't serious bleeding is obviously not familiar with ITP. Another opinion with someone who is experienced with treating ITP would be a good idea.

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13 years 10 months ago #25248 by eklein
Replied by eklein on topic Re: HELP
Yes what Ann said, in big capital letters. Platelet transfusions are used for emergencies like surgery, you might get a few hours of higher counts. And using multiple treatments at once you can't tell which ones work. Sounds like a second opinion would be a GREAT idea, find a doctor who is familiar with ITP current treatments.
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

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13 years 10 months ago #25254 by kathylou11
Replied by kathylou11 on topic Re: HELP
Steroids didn't work at all for her. The IVIG would help for about 1 week after only getting in low 100's but then decrease quickly. The team of doctors said she had refractory ITP. Usually when she is on her period is when it drops down to 2,000 or 3,000 but last Friday when it dropped to 3,000 she isn't on her period. She gets all of the syptoms when it is low. Blood blisters in mouth, blood spots small & bigger spots, bruising, gum bleeds.

Thanks everyone for their comments.

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13 years 10 months ago #25267 by Ann
Replied by Ann on topic Re: HELP
It's a bit early to say she's refractory to all treatments. What other treatments has she tried? I tried six different drugs before sticking with the 7th (Nplate) so take heart, she'll find something eventually.

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13 years 10 months ago #25268 by markhudson
Replied by markhudson on topic Re: HELP
I know in Uk you get branded Refectory if Steroids and IVIG doesn't work but as Ann says that doesn't mean your daughter won't find something that works.

My haematologists said splenectomy was not option for me due to previous surgery and medical response. Your daughter and I get the same symptoms when we have low counts so i know it sucks. What seems to have worked for me is N-Plate so maybe it will work for your daughter too. Though Eltrombopag is a better option but due to other meds i am on it is not useful for me.

If your daughter was getting Platelet tranfusion when she was not having active bleed I would not wanted to be treated by that doctor as it is adding risk for no up side.

Hope this helps and if your daughter wants to chat about my treatments feel free to Email me :)

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13 years 10 months ago #25272 by Ann
Replied by Ann on topic Re: HELP

markhudson wrote: I know in Uk you get branded Refectory if Steroids and IVIG doesn't work

Well no not really. I've never been branded refractory despite failing 6 different treatments. It's not a useful label. The OP is in the US anyway.

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13 years 10 months ago #25343 by DeeDee Marie
Replied by DeeDee Marie on topic Re: HELP
It does sound like your daughter has been "hit" with a lot of treatments in a very short time. Sometimes it takes a while for our bodys to take in all of this treatment. Especially since she had a splenectomy so soon.

I would get a second opinion (I did this last time my platelets were very low). The doctor also told me I was refractory--but so far I am doing okay.

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13 years 10 months ago #25388 by taksmom
Replied by taksmom on topic Re: HELP
I am having the same problems, I have had about 5 platlette tranfussions and IVIG each time. I have had my Spleen removed and I have and am still on prednisone my count will go up after the tranfussions but within a wk or so they go back down. I was told today they want to start a Chemo treatment. I live in a small town and I am not sure if I should go into Atlanta to Emory or to the Mayo Clinic for a 2nd opinion, I only have about 2 more weeks of work before they can let me go, and I am so tired I cant hardly funtion. On top of all of this I have CFS. So should I go ahead with this Chemo treatment or get a second opinion? I was told by my Dr and his partner as well as my surgeon that I am a rare case I am not responding like most. I am in the 10% that dont respond. I am mentally, physical and emotion drained. HELP.

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13 years 10 months ago #25389 by jaing50
Replied by jaing50 on topic Re: HELP
Taksmom-

I am guessing that the "chemo" being suggested is rituxan. It worked for my wife. I would recommend giving it at try. Rituxan DOES NOT make your hair fall out. A very small percentage have a negative reaction. One caveat - it can take 2 or 3 months to see a response. Having said that, Emory or Mayo Clinic would be a good idea for a second opinion - both have excellent reputations and would have world class hematologists knowledgable about ITP. Hang in there! It will get better.

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13 years 10 months ago #25391 by Ann
Replied by Ann on topic Re: HELP
Taksmom, as people said in your other thread, you really need to see a doctor who is experienced in treating ITP. Platelet transfusions are not an ITP treatment and should not be used except to stop serious bleeding and during surgery. It sounds as though your doctors have seen so few ITP patients that they think you are a rare case when in fact you are the same as many of us here. Don't despair, I tried 6 different treatments before the 7th worked so there is plenty of hope, you just need to find the right doctor.

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13 years 10 months ago #25392 by Nicola82
Replied by Nicola82 on topic Re: HELP
Hi I'm a none responder to treatment I've had all available and even trial treatment and still only got 1 platelet and am no longer on any treatment I feel like I'm cracking up it's getting me down so I know how u all feel I've had it for 3 years now and never gone over 60 and always drop bk within a week x

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13 years 10 months ago #25398 by DeeDee Marie
Replied by DeeDee Marie on topic Re: HELP
Hi Nicola,
Are you taking any other medications that might interfer with your platelets? Sometimes there could be some other med or problem that is bringing your platelets back down. Just wondering.

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13 years 10 months ago #25400 by Ann
Replied by Ann on topic Re: HELP
Nicola what treatments have you tried?

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  • 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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13 years 10 months ago #25424 by Sandi
Replied by Sandi on topic Re: HELP
Taksmom - Rituxan isn't chemo. It is used for people wih certain cancers, but it is actually immunotherapy. It would be a logical next step, but it also wouldn't hurt to get a second opinion.

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13 years 10 months ago #25450 by Dean
Replied by Dean on topic Re: HELP
Sandi, would Nurses put on full chemo gear with immunothearpy? I was told Rituxin is a chemo drug. A couple of my nurses dressed up in full chemo gear.

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13 years 10 months ago #25456 by Ann
Replied by Ann on topic Re: HELP
I think they may well do. When I was on CellCept which is also an immunosuppressant, there were very strict instructions not to get it on the skin or anywhere else. I had the liquid rather than tablets and had a special stopper in the top and a syringe which fitted on to the stopper to measure out the right amount. I was not allowed to use a spoon in case of spillage. I had to squirt the stuff straight into my mouth and then immediately rinse the syringe under a running tap and let it air dry. All very precise.

Strictly speaking in cancer, chemotherapy drugs kill off cells that divide quickly ie the cancer cells. Immunotherapy is designed to stimulate the immune system into killing off the cancer cells. Chemo of course also kills off other cells, hence the loss of hair and so on, immunotherapy does not.

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  • 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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13 years 10 months ago - 13 years 10 months ago #25464 by Sandi
Replied by Sandi on topic Re: HELP
It's a common misconception, but there is a big difference between Rituxan and chemotherapy. Ann pretty much summed it up. Immunotherapy targets certain cells, in this case, B cells and T cells. Chemotherapy does not do that; it hits many cells which is what causes the nasty side effects.

Rituxan is a monoclonal antibody.

www.mayoclinic.com/health/monoclonal-antibody/CA00082


Rituxan® is an immunotherapy often used in combination with other cancer medications to treat non-Hodgkin's lymphoma. Immunotherapy works by using your own immune system to fight cancer. With Rituxan® treatment, CD20-positive B-cells, the cells shown to play a role in non-Hodgkin's lymphoma, are specifically targeted and destroyed. A respected therapy that has been in use for over 10 years, Rituxan® has been administered as a B-cell therapy for thousands of cancer patients.

www.cancercenter.com/cancer-drugs/rituxan.cfm

Ha - I am on Methotrexate now which is classified as chemotherapy. I self-inject at home twice a week. You never know....

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13 years 10 months ago #25476 by CindyL
Replied by CindyL on topic Re: HELP
When I did my Rituxan, both nurses' geared up in gown, mask and gloves.

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  • 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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13 years 10 months ago #25498 by Sandi
Replied by Sandi on topic Re: HELP
Mine didn't. I'd guess that different offices have different protocols.

My friend's mother in law had Rituxan and they told her she had to flush her toilet twice at home when she went to the bathroom. I was never told that.

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13 years 10 months ago #25506 by 7hawkc7
Replied by 7hawkc7 on topic Re: HELP
I started this odesy about two years ago after doctor's discovered platelet level was in the 70k's. For the first year hemo dr just watched levels go lower without treatment so changed doctors. Second doctor tried various treatments that didn't work such as IVIG, prednisone, and splenectomy. Platelets leveled at 10,000 - 11,000 with no outward symptoms (bruising or bleeding) just red dots on my lower legs and stayed level for about 6 months. Doc finally tried cyclosporine and after 3 months platelet level went up a few thousand but was told to discontinue due to a slow growing cancerous lump in the breast that was removed 5/2/12. No chemo needed for lump; however, platelets have gone down to 3,000. Doc is starting Rituxan tomorrow. I've read the posts regarding Rituxan and learned a lot but am afraid it won't work either. Has anyone done this treatment with platelet level at 3,000 to 5,000 and no steroid backup? Doc hasn't discontinued cyclosporine?

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13 years 10 months ago #25510 by Dean
Replied by Dean on topic Re: HELP
I was down to 2k when I had my second second rond of Rituxin treatments. Please do not stress out over if it will work or not. Think positive!! You may not see results right away. It can take several weeks after the last treatment before you can respond.
Good Luck!!

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13 years 10 months ago #25517 by Ann
Replied by Ann on topic Re: HELP
Has the doctor looking after you for the breast lump agreed that rituxan is okay? Were you not supposed to stop the cyclosporine completely? Are your doctors communicating with each other?

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13 years 10 months ago #25522 by 7hawkc7
Replied by 7hawkc7 on topic Re: HELP
Breast cancer dr and ITP treatment dr are one in the same. He runs a large cancer treatment facility affiliated with UCLA. This morning my gums are bleeding along with a face covered in red dots and bruising on extremities. Before the nurse 'hooks me up" I will speak with the doctor. I read posts proclaiming success stories on rItuxan and others not so much. I'm concerned about it working for me and even more so the length f time it takes to show a yes or no due to my low levels.

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13 years 10 months ago #25532 by Ann
Replied by Ann on topic Re: HELP
Oh well that's handy having the same doctor for both things. I could have done with that in the past when the haematologist and ophthalmologist didn't communicate.

Success rate of rituxan is something like 50% of people or perhaps a little less. It can work straight away so fingers crossed for you.

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13 years 10 months ago #25533 by DeeDee Marie
Replied by DeeDee Marie on topic Re: HELP
If you check under WebMD, it indicates that you shouldn't take Cyclosporine if you have
Thrombotic Thrombocytopenic Purpura (Sandy, is that the same as ITP?). There could be a possibility that the Cyclosporine has aggrevated your ITP and made your bleeding worse. Just a thought on this med.

Try to calm yourself as there is a good chance that the Rituxin might really help you. I've gone with low levels of platelets for a while (down to 1) and I do try not to stress myself too much as I think it only makes it worse. Now, I believe, they are back to normal (havn't had them checked in a while).

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13 years 10 months ago #25536 by Ann
Replied by Ann on topic Re: HELP
No no, thrombotic thrombocytopenia is TTP. Completely different from ITP.

Cyclosporine used to be used more for ITP than now because the side effects are not great, but it is on the list of drugs in the newest guidelines.

bloodjournal.hematologylibrary.org/content/115/2/168.full

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  • 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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13 years 10 months ago #25539 by Sandi
Replied by Sandi on topic Re: HELP
My counts when I started Rituxan were something like 8k - week 1, 11k - week 2, 3k - week 3 and 150k - week four. I was not taking any other meds at the time.

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