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Nupragen Shots And Hickman Central Line

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Hello all,

 

I am back at Duke beginning my treatment for the Scot Study. Thursday they installed a central line. It was alot different than I anticipated. I had thought it would be completely under the skin. No such luck. They run a line from your jugular down just below the clavicle on the right side of the neck, with two lines hanging out, which I would guesstimate are 3 inches in length each. Frankly, it is alot more uncomfortable than I thought it would be, but hopefully the sutures will come out soon and make it more manageable. In addition to that, I have also received 4 shots of g-csf(Nupragen(sp?)) in the stomach. These are to mobilize stem cell growth from the bown marrow. I was warned about it causing increased joint pain and boy has it. THe shots themselves are not that bad, but the later affects are very painful. They have upped the pain meds so hopefully it will lighten up a bit. Monday and Tuesday I will go through pheresis(sp?), where my stem cells will be harvested. Hopefully, the count will be high enough and then I go back home only to return on the 5th for radiation and chemo(2 days of each) and then the transplant. Pheresis doesn't look like it will be too bad, but I am told it is 6 hours each day. I think the hardest part will definately be the radiation. They have gone to great lengths to measure my lungs and kidneys to fabricate lead shields to protect the organs. The hard part I think, will be sitting still for 2 2 hour sessions each day. I am very anxious about this and will be meeting with somebody Monday to hopefully give me some stress reduction techniques. In any event, I hope all of you are doing well. I just wanted to give an update.

 

Stay healthy

 

Dave

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Dave,

I wish for you that everyone who touches you during your procedures does so with competant and loving hands!

I wish for you that everything goes the way it is intended and that your results are better than expected!!!!

I wish for you the ability to remain calm when crazy things are happening to you and that you are not constantly second guessing your decisions (one of my problems!)

I wish for you a quick recovery and please know that everyone here is thinking of you and wishing you the same!!!!

Much love,

Lauriejill

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Hey Dave,

 

Thanks so much for filling us in. I have this overwhelming urge to fly to wherever you live and give you a real live hug, and then sit with you through all of your treatments. I'm actually getting quite teary-eyed over all this. You always seem so strong and positive, somewhat pragmatic, but I can sense the underlying fear and uncertainty in your post.

 

I am sending many positive vibes your way, we will all be thinking of you. Remember there will be ups and downs with this, but the end results is what will hopefully pay off!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Dave,

 

Thank you so much for leting us know what is going on and giving us an update on the procdedure. Please know that all of us are thinking of you and sening you lots of positive thoughts and healing wishes. Please do keep us updated as things progress...we are all watching you carefully and wishing the absolute best for you!

 

Warm wishes,

Heidi

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Dave,

 

Thank you! Your post is amazing...Do this whenever you are up to it. It not only keeps us informed of your progress and how you are doing so we can hold you in our thought and cheer you on, but it's also a sort of journal that you'll have for after it's done.

 

This whole process is so amazing and so are you! One relaxation technique that has always helped me is putting myself in a favorite place mentally and then consciously breathing in through the nose and out through the mouth at a slow rate while trying to stay physically relaxed. (old lamaze birth method) Practice it while you're just layin'g around doing nothing :)

 

Sending you strength, courage, peace and *health*!!!

 

xoxo emmie

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Hi, Dave,

 

That sounds scary and painful, but maybe it will pay off big time and you will start feeling a lot better soon. I am definitely thinking of you and sending healing wishes your way. Do keep us posted!

 

 

 

Mary in Texas

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I went through a very similar procedure for the treatment of Burkitt's Lymphoma (UC San Diego Med Center).

 

The pheresis catheter was quite annoying, but got better after a while. I had it for about 6 months.

 

I got (or gave myself) neupogen (Neulasta) injections during the chemotherapy to encourage the growth of white blood cells. This because the chemo kills them all off, and neupogen helps to get them going and bring back the immune system.

 

For the stem cell transplant, neupogen increases the number of stem cells so more can be harvested. Bone pain (mainly in the lower back, for me) is caused (I believe) by the bone marrow going into overdrive making white blood cells and their precursors. A narcotic pain med helped me wih this pain.

 

As for the harvesting, it is somewhat like dialysis. Your blood goes into a machine by one tube and then back to your body through another. This went on for 5 or 6 hours on two days. I just sat there and watched TV, read, or slept. Not a big deal.

 

The worst part was that it took a long time to get over it. I was exhausted for months.

 

I didn't have radiation - just high-dose chemo.

 

Good Luck,

 

Craig

 

CRST Limited Scleroderma, diagnosed 1977

Secondary Sjogren's

Secondary Pulmonary Hypertension

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Hi Dave! I wish you the best of luck with the SCOT study. I am still trying to get approval from BCBSMA for it. I have been denied in three appeals and am now applying for an external review. Can I ask what insurance approved you? Were you approved on your first application? There is another person that has been denied and one that has been approved with the same insurance that I have.

 

I am so happy that someone was successful and hope that it works wonders for you. Take care and be well. Pam

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Hi Pam and others,

 

Thank you for your posts. Pam, I was approved the first time. My ins. co. is United Healthcare. I have just completed 2 days of apheresis and unfortunately not enough cells were collected, so I have to stay an extra day. Hopefully I will be leaving Thursday now. In any event, thank you for all your support.

 

Dave

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Thanks for letting us know. I hope you can get some good stress reduction techniques. That is a lot you are going through. Take care and keep us posted.

Nan

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