Have you started Radicava? Use this thread to discuss experiences with receiving radi

[Cab6711]

I had my second infusion today, slight headache yesterday, bad headache today, will try to take some ibuprofen before my infusion tomorrow to see if it makes a difference. My fasciculations have gone from active throughout the day to only a few times today (that I noticed), maybe a coincidence but a change! I do my infusions at a cancer center, I do look forward to being able to do them at home. They are scheduling me for a port.

 

[Cab6711]

Medicare is my primary and BCBS is my secondary and I am covered 100%

 

[Miav123]

My father finished his first cycle yesterday. He seems more "out of it" and tired these last two weeks. Anyone else experience this?

 

[Tedstehr]

I would not personally do a port right away. For various reasons not everyone continues the infusions after the initial round or 2. Are your wife's veins good enough for regular IVs for that long? I ask because mine aren't. I am not doing radicava but if I did I would hope to get the first week by peripheral iv then do a PICC and commit to a port only after a couple of months.

My opinion only. Others have done a port immediately

Strongly agree with Nikki. A PALS from this site had a strong adverse reaction (nausea) and had to stop after two infusions.
That would have been awful if she had the PICC line inserted for nothing. Everyone seems to take the insertion pretty lightly, but is a pretty major day surgery. Cut a hole in your chest and insert a plastic tube through a vein to within a few inches of your heart? Which is why radiology is involved. I will get one eventually (mainly for cost because paying someone to come over and do it is getting expensive.) Luckily my veins are prominent but they are already starting to "hide" when the butterfly gets near!

 

[Tedstehr]

Last of 14 days tomorrow. No adverse reactions. I think I may have more energy but may be physiological. I feel good after the infusions but it may be the saline as I don't always drink enough. And I too have less fasiculations but I also started Riluzone a few days ago.

Most of my life I have stayed away from drugs (other than some recreational drugs during and after high school. I smoked it for anxiety related reasons. I was anxious I wouldn't be able to get more.)

With the cockiness of youth I looked down on people who had to take prescription drugs, as if it was choice. Now I am that guy and I feel foolish now.

Oh, I have to go, time for my Riluzone.

 

[Chief T]

We are doing at home infusions, using a port. Walgreens mails all supplies to our home. We have a nurse access the port and change it out every 7 days during treatment. We are brave enough yet to access the port. However, daily infusion treatments are easy to administer. Hopefully, this helps.

 

[Wilson2009]

We are now doing home infusions, but using a PICC. The VA trained my wife on all aspects of the process. She is doing a super job doing the infusions. I am really proud of her. She rocks!

By the way, inserting the PICC was done by an RN at the VA infusion center and took less than 45 minutes from start to finish.

 

[kellykago]

My father is on day 13. No adverse side effects but no noticeable improvements either. I really wish this was available to him last year when he still had full use of his left arm. Hopefully this will give him more time on his legs.

Some are saying that after they get a PICC line or port they will do the infusions at home. Does this mean you will administer the medicine on your own or with a nurse at home? Right now, my father has a nurse at home, but we would love to save the cost and do it on our own if possible. If anyone is already doing this, please let me know how it is going.

I start my second round tomorrow. We do the infusions at home ourselves. Kaiser delivers the medication to my home weekly. I had a picc placed on the second day of my first round. No problems.

 

[Wilson2009]

Has anyone else experienced an issue with inserting the spike into the Radicava IV bag, either at a center or at home? The VA RN had an issue with seating the spike on the first bag and my wife and I just had the same issue. Instead of going in smoothly, there seems to be a back pressure that prevents the spike from fully seating.

 

[gigem]

Has anyone else experienced an issue with inserting the spike into the Radicava IV bag, either at a center or at home? The VA RN had an issue with seating the spike on the first bag and my wife and I just had the same issue. Instead of going in smoothly, there seems to be a back pressure that prevents the spike from fully seating.

We have not had that issue. Our infusion nurse said that she had heard about bag leaks, etc. So we are very careful to insert the spike right in the middle of the rubber area. Five days, ten bags, no issues...

 

[Wilson2009]

This was the fourteenth bag that my wife had spiked. Thanks for the tip on hitting the bag dead center

 

[Lkaibel]

Brian had his first infusion today. No nausea or loss of appetite so that's good. His port is so big and lumpy he hates it, but hey if this slows things down progression wise I think he can handle that.

 

[Lkaibel]

Not true, they do cover it. My husband is 100% covered and on Medicare.

 

[Tedstehr]

Has anyone else experienced an issue with inserting the spike into the Radicava IV bag, either at a center or at home? The VA RN had an issue with seating the spike on the first bag and my wife and I just had the same issue. Instead of going in smoothly, there seems to be a back pressure that prevents the spike from fully seating.

I had to buy different brands of 100 ml bags due to a shortage. On one make the spike fit in no problem, but the nurse struggled to get the spike in the other make. He is a 250lb body builder so struggle for him might be an understatement for you and me! Try a different brand if you can.

 

[Promanny]

Just started Monday, at U of I Hospital, 2 days there. Got my port in yesterday at 4PM. Just finished my 3rd day at home.
Slight headache the 1st day, muscle spasms on the table while getting the port in on 2nd day (maybe the Fentanyl). Feel fine now.