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GocartMoz

Nupragen Shots And Hickman Central Line

23 posts in this topic

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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Dave

Your in my thoughts please keep us posted

Birdmans Wife


Hugs for All,

 

Julie (Bird Lady)

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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

I am thinking of you and sending you good vibes!

My fingers are crossed!

Mimi

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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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They say the third time is the charm, Dave. Let's hope that's the case so you can leave Thursday. Good Luck!

 

emmie

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Dave,

I feel your pain and am thinking only happy thoughts for you! You are one step closer to recovery!! We will get you a teeshirt that says "i survived my SCT" or better yet "I'm well - how about you?"

 

My insurance company is asking me for more bloodwork to make sure I am not HIV positive or a cocaine addict! I also have to provide a doctors statement saying that I am mentally competent to have a SCT. What nonsense -- but I am jumping through the hoops -- hopefully for a positive approval.

 

In the meantime, stay calm. Think of that beautiful florida weather. I was just there this past weekend -- I ran away with my daughter -- rented a convertable -- collected seashells and pretended everything was fine.

 

Courage,

Gidget.

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Well I hate to say it but this trip has not turned out as I hoped, but I know things will look up in the future. When I went to my extra day of pheresis on Wednsday(thd day I was hoping to be home) my heart rate jumped to 161 and my blood pressure dropped to 75/55. I was light headed and dizzy and I was taken to the hospital. They did a procedure where they stick a scope down your throat to look for clots and if there are none they convert you by shocking your heart back into normal rhythym. Because of the lab work, the doctors at first were concerned I had had a heart attack, but they later confirmed I had not. They did, however, do a heart cath to make sure my heart was strong enough to go through the transplant process. Thankfully, the heart cath showed nothing, so the transplant is still on. I was released from the hospital on Friday. Unfortunately, however, they only collected less than half of the stem cells needed for transplant. I was hoping I could complete the process while I was up there, but it couldn't be worked out bcause of schedules. I returned home Saturday and will be returning tentatively the 10th to complete pheresis. Just a bump in the road. The transplant looks like it will take place in March now as opposed to Feb. Like I said, just a bump in the road. To top it all off, my 15 1/2 year old Yorkshire Terrier passed away while my wife and I were at Duke. I felt so horrible for our kids having to go through that without us, but thankfully their aunt was with them. More updates to follow .

 

Dave

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Hi Dave,

 

That sounds more like a near-death experience than a little "bump in the road" to me. But it is probably your manner of taking things in stride that will pull you through the whole transplant procedure.

 

I'm sorry your transplant is delayed, but at least it has not been cancelled. I'm sorry about your dog passing away, too. It sounds like a tumultuous time, but your flexible attitude will go a long ways towards making the very best of all situations.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Dave

First off--so sorry to hear about the passing of your dog. We have always had animals and I know how sad losing a "family member" can be. I am sorry for the timing too.

Second--I am also sorry for your little bump in the road. I do feel that everything happens for a reason (I know this statement will anger some) and that this glitch will be just that.

All of us here know that life is not a gentle road!

You have an amazing attitude and outlook--it will get you thru!

Thinking of you

Mimi

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Hi Dave,

 

As always, thanks for the update. As you know we are all watching you closely and eager to hear how things are going. I am sorry to hear of the latest setback, but glad it wasn't a heart attack and that they can still go through with the transplant. I hope you are feeling better and when you go back on the 10th, things go well.

 

Your attitude is amazing and I am sure it will see you through a lot of things.

 

Warm wishes,

Heidi

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Dave,

 

Hang on, Dave. Roller coasters are always wild rides! Hugs to you and the kids...losing the family dog is always so, so tough.

 

Get rested up for the next "thrill ride"!

 

xoxo emmie

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Dave,

I am so sorry to hear about your terrior but it sounds like you have amazing kids. I am sure you are happy to be back at home. And you are right -- when it is all said and done, this extra trip will be just another "bump in the road" and maybe having the SCT in March is even better as it is after cold season. All the best to you and your family.

Regards,

Gidget

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