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

[ShiftKicker]

Cherise- there is another thread for Canadians discussing Radicava here for more Canadian oriented details: https://www.alsforums.com/forum/gen...-mnd/39686-radicava-discussion-canadians.html

You can also use the forum search function- keywords "Radicava Canada" bring up a few other threads to find some more info and past discussions just in case Ted doesn't see this quickly.

 

[Tedstehr]

Cherise,

Please contact your father’s neurologist immediately. Mitsubishi Pharma is marketing Radicava in Canada. They have a special access program now in place to give the drug for free to patients with ALS. I believe the criteria will be within two years of diagnosis and a forced vital capacity of 80% or higher.

If you if your neurologist is unaware of this program, please let me know and I will talk to mine and help to get your father’s name on the list. There is a timeframe for this program so it is best to get it done as soon as possible.

Nice to meet you on the forum.

 

[Statius@]

Blitzc--I was interested in your comments on your experience with Radicava. I've been fortunate in having no issues with the needle, tho it's certainly not possible to forget it's there when it is. Oddly I've had the opposite experience with AquaGuard--it simply won't stay stuck to my chest during a shower. I don't have much hair in that area but perhaps I should try shaving what there is. Anyone else found a product to keep the port area dry while bathing?

Ed

 

[Clamdigger]

I use the AquaGuards as well. I found that only peeling one side and making sure that it's stuck to the top of the bandage covering the port works best for me. Kind of just hangs like a drape. Still have some peeling off but at least some of it stays stuck.

Haven't had any luck with any of the other options.

 

[Cherise77]

Tedstehr - Thank you very much! I’ll get his neurologist to act fast with this! It sounds like it’s working well for a lot of people.
When did you start using it? And have you found it to slow down your progression quite a bit?

 

[blitzc]

Ed- once I found the right size of AquaGuard, I have had good success. I have found that once it is down, don't try to adjust or move it as the adhesive isn't as strong after that point. I have also found putting just a little tape in the top corners is also helpful. I will also say that on days when I wash my hair, which is not every day, I place a washcloth over the guard to help with the large quantity of shampoo and water. I have so much trouble my fingers and hands that the less tape I have to tear off, the better. I say try the idea of shaving and see if that helps. Obviously, men and women each have their own issues with this.

 

[Nikki J]

For those having port issues maybe look at the oncology support forums? They will have lots more experience and time to build collective wisdom

 

[wmilo]

Regarding protecting the port and dressing for showering while the port is accessed:
I was given some samples of a product called Anchor Dy, and had good success with it. It is available in various sizes; the 7x7 size was what I had and it was sufficient to cover my dressing. It stuck very well, and it was not necessary to shave hair (although you may lose some on removal). It is available on Amazon, but the seller charges about as much for shipping ($9.89) as for the product (7 sheets for $10.89). If you can find it locally, it works well.
I've also tried a 3M product called Tegaderm Transparent Dressing sold as quantity ten of 6-inch by 8-inch dressings for $15.23. However, it is eligible for free Prime shipping (or free shipping with Amazon's minimum purchase requirement), which makes the per-sheet cost less than the Anchor Dry. The drawback of this product is it is clingy over the whole surface of the dressing, which makes it trickier to apply and remove, and I find that having another set of hands to help is easier.

 

[larry40]

I was diagnosed 3/22/18 it began in left hand and spread to right hand. Rest of me is fine. Finishing round 2 of Radicava. No side effects, go to infusion center for this. Have chosen to have needle stuck into me for each iv infusion. No port nor leaving needle in place for 3 days.

 

[PamC]

Hello everyone! My husband has been on Radicava since Sept. 2017. The infusions are easily done at home. We have the Radicava delivered by special delivery. There have been no adverse reactions, but we have no way to determine effectiveness. As ALS effects everyone differently, we do not know how my husband would be faring if not on it. Word of caution on insurance. Being amoung the first to recieve Radicava, we have had a disaster trying to get the bills paid by our primary insurer. I spend hours every week advocating and threatening to sue. There is an end in sight, I think, so hopefully it will be resolved. If we can be of any help to anyone struggling with insurance, please let us know.

 

[blitzc]

PamC,
My doctor made all the arrangements with a company called Searchlight to handle the cost of medication above the amount my insurance would cover. We didn't start the infusions until both Searchlight and my insurance company had total agreement on costs. They also had to determine if the insurance company would pay for the first two treatments at the hospital instead of at home to watch for potential side effects. We've had no problems.
Cathy

 

[PamC]

Hello Cathy,
I am happy to hear that the process was smooth for you. We started with Searchlight and they were to make arrangements with our insurer. The difficulty for us is with insurance company agreeing to coverage but then not paying. It has been a fiasco with billing errors, miscommunication, etc. I called Searchlight twice but they said that they could not help us. I will keep this in mind and try again. Thank you for your supportive response. Other than that, the infusion is really easy for us to manage at home. All treatments have been done in the comfort of our home.
Best wishes to you,
Pam