My "helper" is down...! - Page 16 - International Association of Penturners
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Old 03-09-2017, 08:59 PM   #151 (permalink)
 
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Wow, a sad and unfortunate situation. Like Edgar said, you cant beat yourself up for that. Why didn't the doctor give you a written (well, not hand written if your doctors write like they do here in the states)or typed up set of care instructions? It is impossible to remember all that's said in situations like this when you've got so much on your mind, and to make that more complex, the doctors use terms and big fancy words that most times we really have no idea what they really are. Also, if it wasn't for your understandable frustration and disgust with the way things were being handled, and you contacting them , you STILL wouldn't have known.
Don't let that get you down, a person can only do so much, and she needs you to be strong now more than ever. And...when Merissa is back to feeling pretty good ( and it will come soon) you've got to be strong just in case she chases you around with a cast iron pan for payback!!!
Hang in there George, we will keep you both in our thoughts and prayers!
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Old 03-10-2017, 06:53 AM   #152 (permalink)
 
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George, Having been through something similar the only advice I can give is no matter how hard it is, keep a positive attitude and ride over the crap. If you don't your in trouble. The 2 greatest things we have in our life is LOVE and HOPE and we see your love for Merissa and our hopes and prayers go out to you both. Ian & Jill.
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Old 03-11-2017, 11:27 PM   #153 (permalink)
 
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Thanks guys, I always appreciate kind words...!

I think I may start to take my voice recorder and use it (with the specialist knowledge and permission) and hear it all again at home and when more relaxed, they may help to pick up on things missed during the consultation...!

The tablets that Merissa is now on, the ones she was suppose to have start taking after the specialist appointment but that I stuffed-ud is the Panafcortelone, she is on 7.5mg daily but soon after the first infusion (that we so much have been waiting for...!) she will go to 60mg for a few days, then back to 30mg a few days later back to 7.5mg, this will all have to happen in 14 days cycles, as per the infusions.

Has been now a few days since I realised my mistake and got Merissa on those tablets, according to her, the pain sharpness ha been reduced and the swelling in her hands and feet are a little reduced, these tablets alone are not capable of stabilise the RA, they are a supportive drug for the new infusion treatment she will start on the 24 March.

Any improvement even if slightest, is always welcome...!

We appreciate any and all positive thoughts..!

Thank you,

Cheers
George
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Old 03-17-2017, 09:30 AM   #154 (permalink)
 
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Do you know what her new infusion is going to be? Just curious. Hope it works fast!

Give her my love, she is often in my thoughts and always in my prayers.
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Old 03-19-2017, 09:16 AM   #155 (permalink)
 
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Originally Posted by sbwertz View Post
Do you know what her new infusion is going to be? Just curious. Hope it works fast!

Give her my love, she is often in my thoughts and always in my prayers.
Hi Sharon,

According to the info sheet the specialist gave her, the name is Rituximab the Brand name is "Mabthera".

I'm most surprised and pleasantly amazed as to the improvements Merissa has shown since she started on these new tablets Panafcortelone, even though at a fairly small dose compared to what she will be on for the first week after the infusion (60mg) and then 30mg for the following week and then the next infusion is administrated and from what I believe, the intake of the new tablets will be repeated every 2 weeks for at least 3 months, the minimum time required for the test.

We also speak of you often, if not for the association you have with the visually impaired people, your pen turning and off-course your battle and experience with the RA.

While I'm talking about pen blanks, any news of the big box I sent..?

Cheers
George
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Old 03-19-2017, 02:52 PM   #156 (permalink)
 
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George

I am so sorry your helper has been down, but glad that you at least have a treatment plan. Rituximab is one of the meds my son is on for his cancer. His treatment is called R-CHOP, each letter representing a different drug. Costs about $30,000 for each treatment, hopefully ending at six. She will probably get a rituximab/methotrexate combo which hopefully both costs less and has less side effects. Watching a loved on receive these powerful drugs is difficult to say the least. Let her know that she is being prayed for.
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Old 03-21-2017, 12:26 AM   #157 (permalink)
 
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George

I am so sorry your helper has been down, but glad that you at least have a treatment plan. Rituximab is one of the meds my son is on for his cancer. His treatment is called R-CHOP, each letter representing a different drug. Costs about $30,000 for each treatment, hopefully ending at six. She will probably get a rituximab/methotrexate combo which hopefully both costs less and has less side effects. Watching a loved on receive these powerful drugs is difficult to say the least. Let her know that she is being prayed for.
G'day Steve,

Thank you for your words, I will let Merissa know of your thoughts...!

Merissa doesn't do well at all with the methotrexate, she has been on it in the beginning but she had to stop. For whatever the reason, the Department that gives the authority for these treatments seem to be pushing methotrexate on each treatment there is, they will only allow a new drug to be tested if it is done in conjunction with a certain amount of methotrexate.

The specialist knowing how Merissa reacts to it, have organised a special tablet that will need to be taken 4 hours after each weekly methotrexate injection, that tablet does cancel the methotrexate before it starts to do harm, this seems to be working and Merissa doesn't seem to suffer from any of the side effects she knows well from the methotrexate intake.

I was not sure of the treatment costs but I have ben told that it was very expensive and reason why, the patient will have to go through many other less expensive treatments before this one is authorised. As far as I know, this new treatment will be administrated twice a month for at least 3 months so, you are correct, the 6 treatments are all that is schedule at this point.

Cheers
George
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