PICC line and med change

[Wewo01]

Hi all, I sure hope you’re all doing ok and able to avoid “Rona”! For those of you not so lucky, I wish you a speedy and easy recovery.

On Monday, I am get a PICC line placement for phlebotomies. My hem/onc dr has reduced my HU from 1500 to 500 just a few days ago. My stomach already feels much better! My dr feels that I will only need one or two phlebotomies to get my HCT from 48.2 to 42. I’m thinking at least 3. I see her on Jan 29 and her plan is to switch me to Rux. I see my MPN specialist on Feb 9. He had also suggested Rux. I did consult with my dermatologist, who just removed a SCC from my hand last month. Her opinion is that I see her once yearly, continue with sun avoidance and sunscreen and to watch for any skin changes.

I’m so happy to get off of HU! I just cannot tolerate it. I hope Rux is my answer!

Take Care!

Kim

[mhos61]

Hi Kim.

I’m just curious to know if you were offered Pegasys at all?

[Wewo01 in reply to mhos61]

No but I definitely want to ask my Dr about it. She was rather negative when I asked her in early December. She said there’s too many adverse reactions and feeling like you have the flu. If it’s just a day or two of that then what’s the problem?

[mhos61 in reply to Wewo01]

Yes, I’m glad you’re going to ask about it. You’ve come so far already, and it would be a shame to get it wrong now.

The only reason I asked is I believe Rux may also be associated with SCC.

[Wewo01 in reply to mhos61]

It definitely is associated to SCC. I really want to see if I can do Besremi.

[hunter5582 in reply to Wewo01]

While RUX is certainly a worthwhile consideration, I would be sure to check into one of the the IFNs. Particular if you can access Besremi. While the PEG-IFNs most certainly can have adverse effects, some of us tolerate them quite well. PEG has been great for me. All benefit. No adverse effects.

We are all different. you do not know how you will react unless you try. Do remind your doc that it is the patient's preference that drives this decision, not the doctors. Doctors advise and consult. Patients decide.

All the best.

[JediReject]

Hi Kim it seems you git a bit going on there, just to wish you the very best of luck going forward and the Rux works for you should it be prescribed. As you're likely aware it's a game changer for many and I hope it is for you.

Chris

[Wewo01 in reply to JediReject]

Thank you, Chris!

[JediReject in reply to Wewo01]

Hey Kim, , , , meant to ask you , having had both Hickman and Tessio lines fitted which were in my chest I can see the value of using a line. The Picc line is into your arm threaded through a vein and no doubt will make things easier. I wondered if you need only 2 or 3 phlebotomies is the line a must for you or do you have some trouble blood giving / letting. Or is it going to be longer term use depending on how Rux works.

Just curious I'm a nosey devil 👃👺.

Also meant to wish you luck having the Line inserted on Monday.

Chris

[Wewo01 in reply to JediReject]

I have always been a challenge to stick but over the last year it’s almost impossible to hit my veins. They are small, deep and tend to roll. It’s really been a nightmare!

[JediReject in reply to Wewo01]

Aye well all for the best then , , , should help you enormously!

[Wewo01 in reply to JediReject]

Thanks, Chris!

[Wyebird]

So glad you are feeling better. I need to google Picc line. Hope all continues to go well.

[Meatloaf9]

Good luck to you in getting the picc line. Hope it serves you well until you are done with the phlebotomies. Hope you are able to access the besremi, please keep us all informed. Best to you always.

[Wewo01 in reply to Meatloaf9]

Thanks so much! I am going to push for Besremi!