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Post by patngin on Feb 13, 2015 23:37:48 GMT -5
Well some good news and so so news. I weighed 143 today up 4 lbs. I also have shrunk so now I am 5'6" so that makes my BMI 23. They did the MRI the other day and I have some compressed disks in my lumbar must be the cause of the height diff. This hemotologist is going to take a bone marrow sample to get an accurate test of my iron level then probably infusiions. But he wants to make sure because he said blood tests aren't as accurate as bone marrow. So that is next Wednesday.
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Feb 14, 2015 10:16:09 GMT -5
Post by newyorkbitch on Feb 14, 2015 10:16:09 GMT -5
Well some good news and so so news. I weighed 143 today up 4 lbs. I also have shrunk so now I am 5'6" so that makes my BMI 23. They did the MRI the other day and I have some compressed disks in my lumbar must be the cause of the height diff. This hemotologist is going to take a bone marrow sample to get an accurate test of my iron level then probably infusiions. But he wants to make sure because he said blood tests aren't as accurate as bone marrow. So that is next Wednesday. Ask him if Feraheme is an option. Much easier and faster than Venofer etc
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Feb 14, 2015 14:06:48 GMT -5
Post by patngin on Feb 14, 2015 14:06:48 GMT -5
OK I'll do that. I don't see the doc until 27th after the marrow test.
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Feb 14, 2015 14:07:53 GMT -5
Post by patngin on Feb 14, 2015 14:07:53 GMT -5
He said it's pretty painless just local anesthetic.
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Feb 14, 2015 14:09:47 GMT -5
Post by patngin on Feb 14, 2015 14:09:47 GMT -5
This is a pretty fancy place. I'm sure it is available.. They did blood tests and had the results in 10min, this place is huge. Cancer Care NW This doctor seemed really informed compared to the VA. He also said I should have another CT at Inland Imaging because their equipment is much better then the VA and so are the Radiologists. He had all my records from my PCP and the VA. Seemed like a really intelligent guy and very pleasant. The doc I'm going to see is out of town because her mother passed away. The VA told me to come back again in 3 months and redo CT he said they have me just going around in circles and they couldn't see the lymphnodes in my chest he said that the CT at Inland will be much more thorough.
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Feb 14, 2015 17:04:05 GMT -5
Post by bboop on Feb 14, 2015 17:04:05 GMT -5
Sounds like you have hooked up with at good doc...now let's see what the tests say. Best wishes to you Pat.
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Post by newyorkbitch on Feb 14, 2015 21:14:18 GMT -5
This is a pretty fancy place. I'm sure it is available.. They did blood tests and had the results in 10min, this place is huge. Cancer Care NW This doctor seemed really informed compared to the VA. He also said I should have another CT at Inland Imaging because their equipment is much better then the VA and so are the Radiologists. He had all my records from my PCP and the VA. Seemed like a really intelligent guy and very pleasant. The doc I'm going to see is out of town because her mother passed away. The VA told me to come back again in 3 months and redo CT he said they have me just going around in circles and they couldn't see the lymphnodes in my chest he said that the CT at Inland will be much more thorough. It's not a question of availability - it depends on whether Feraheme makes sense for you and if it's covered by your insurance. It's more expensive.
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Post by Joanne on Feb 15, 2015 7:48:19 GMT -5
Hi Pat
I've not posted here in a long time, but pop over when I can to read. The reason I haven't posted is I'm busy being a full time caregiver to my son who had a bone marrow transplant for cancer at the end of last year.
I just read that you need to have a bone marrow biopsy, and that pushed me out of lurking to give you a bit of advice. I've been in the room for my son to have probably more than a dozen of them over the past few years. I dont want to scare you, just want to set your expectation that there is no way I would describe them as pain free. I'm telling you this because there are things you can do and request ahead of time to make it easier. So much depends on the preparation and the technique of the person doing it, so preparing in advance can make a big difference. I've seen all types - from ones that made my strong 22 year old son cry, to others where he just had to take a few deep breaths and it was over.
1 - Request pain meds and anti anxiety meds ahead of time. They give my son Ativan and Oxycodone 30 minutes ahead of time. Relaxing will really help ease any anxiety and make the whole thing go faster. Of course make sure you have someone to take you home if you take those meds.
2 - Insist that they take their time in the prep. They will numb the area with Lidocaine. Make sure they give it time to work. Have them quickly massage and rub the area to spread it around. Have them do it in multiple layers. The skin, then the tissues underneath, then around the bone. Have them test the area "can you feel this?" before starting anything more invasive.
3 - They will do something called an aspirate - sucking some of the bone marrow and fluid out. My son said it makes a BIG difference in how they do this. He said those that take a long pull of it are much more painful (he said think of them hooking you up to a car battery) vs those that take a slow, short pull - even multiple short pulls.
4 - Watch the procedure on Youtube so you know what to expect. His first one was the worst, because he was told like you - eh, it doesnt hurt, it's like having a tooth pulled. No, it really isn't. But it's do-able. The whole thing takes maybe 30 minutes, but the painful part is only for a few moments.
Again, I wondered if I should post this because I dont want to scare you - we've been fighting bone marrow cancer for two years, and I am a peer to peer support person for the Leukemia and Lymphoma Society so I have seen so much of this and know that these techniques will help you, that is why I am sharing.
Good luck! Joanne
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Feb 15, 2015 12:43:50 GMT -5
Post by OnMyWay2Thin on Feb 15, 2015 12:43:50 GMT -5
Joanne,
What wonderful advice. Sending prayers for your son and you...
Kelly
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Feb 15, 2015 13:14:18 GMT -5
Post by patngin on Feb 15, 2015 13:14:18 GMT -5
Thanks for the advice. I have both those drugs on hand so will definately take them before hand. Now I am a litlle anxious. They are having a PA do it but she is supposed to be really good at it. She supposedly does a lot of them. I'll hope for the best.
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Post by Joanne on Feb 15, 2015 15:35:41 GMT -5
Thanks for the advice. I have both those drugs on hand so will definately take them before hand. Now I am a litlle anxious. They are having a PA do it but she is supposed to be really good at it. She supposedly does a lot of them. I'll hope for the best. You'll be fine. Actually, the thought among the cancer patients is they all prefer the PA's to the doctors. Everyone says the PA's are more careful and patient. Even if you do have some pain, it's very, very quick. Don't be nervous. I hesitated to post because I didnt want to give you anxiety. I just know if you follow those tips you'll have a better experience. Don't sweat it, it will really be ok. And quick.
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Feb 15, 2015 20:44:38 GMT -5
Post by patngin on Feb 15, 2015 20:44:38 GMT -5
Actuallly I am less concerned about this then I was about the colonoscopy which didn't turn out that good. I'll take a xanax and a half before I go in.
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Post by newyorkbitch on Feb 15, 2015 23:48:51 GMT -5
Actuallly I am less concerned about this then I was about the colonoscopy which didn't turn out that good. I'll take a xanax and a half before I go in. Please discuss with your doctor well beforehand. Joann said REQUEST anti anxiety meds, not just take them without discussing with your doctor beforehand.
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