Search results

May possibly be the longest post ever, but here are 6 published journal articles/abstracts that support use of Kalydeco in those with evidence of residual function. I wanted to thank ladybird, who is a member of this forum. She shared many of the articles with me and they were successfully used...

I'm sorry he's having such a difficult time. Have you tried using a special nebulizer to deliver antibiotics directly to sinuses (PariSinus)? Or nasal rinses that have antibiotics added to saline rinse? For either of these you would need to have meds specially made by a compounding pharmacy...

I’m on the great strides advisory committee for my local CFF chapter. I have a meeting tonight and am looking for ideas to pass along. It’s been noted that most of great strides participants are families that have children with CF. There’re a lot of activities at the walk that are focused on...

I’ve had a lot of problems with hemoptysis over the years. Please know that you’re not alone with your feelings of anxiety. As soon as I feel that gurgle in my lungs, the fear can be gripping and paralyzing. As Aboveall suggested, having a detailed plan is a very good piece of advice. Involve...

I’m feeling MUCH better about things. I just spoke to the director of clinical communications for the CFF who just happened to be one of the nurses that I’ve had in the past. Talk about a stroke of serendipity : ) We had a long conversation about off-label use, collecting data for off-label...

I apologize to anyone who has been trying unsuccessfully to access residual function articles from the CFF’s patient resource center that I said would be available to them. Unfortunately my contact at CFF resource center is now denying that he ever told me that articles would be available for...

I’m sorry your daughter is having such a difficult time. Adolescence is such a trying time for anyone; but dealing with CF and her history of being in an orphanage takes the stress of adolescence to a whole new level. There was a post recently about Orkambi and fat that you may find helpful...

Depression and anxiety are common in CF. Dealing with a life-threatening, chronic disease on a daily basis is difficult. And the fact that we don't have the option of going to a face to face support group with others traveling the same road doesn't help matters. The prevalence and importance of...

Yes, I know that 661-108 trial doesn’t include the other ½ of residual mutations. I guess I was being overly optimistic in estimating 18 months since there isn’t even a study in place to address the other ½ of residual function mutations. It’s just inconceivable to me that there is so much...

Autumn and Aboveall- Please don’t apologize for your excitement. This is a huge win in the CF community. I, too, was extremely excited when I was told about this. I wasn’t expecting it at all. I didn’t even know it was a possibility to summit a NDA based on a Phase 2 study. I really did cry...

This press release brought mixed emotions for me. I am absolutely elated that 1,500 more people will hopefully gain access to this potentially life-changing drug much faster than I was expecting. I thought the label wouldn’t be expanded until the results of the VX-661-108 study came through...

I used the “Great Strides Taking Steps to Cure CF “ logo on my team t-shirt design and the local chapter e-mailed me a reproducible copy of the logo . I think they have some other logos too (65 roses and a few others)

Just wanted to share some recently published journal articles with the hope that it may help someone with a residual function mutation who is fighting for insurance approval for Kalydeco. I also hope that it encourages those with residual function mutations to get involved with VX-661-108...

I agree that you should have a repeat sweat test and an evaluation from a CF doctor. Make sure it’s at an accredited center. Here’s a link to help you find CFF accredited centers in your area: https://www.cff.org/Locations/FindACareCenter/ To put your mind at ease a little while you wait for...

For anyone starting Orkambi, it’s a good idea to fill out a CFQ-R (cystic fibrosis quality of life questionnaire) prior to starting. Make sure it is documented in your official healthcare record. Someone told me that United Healthcare has agreed to cover Orkambi for 6 months and then they will...

I’m not sure when inhaled levofloxin will be available for treatment of pseudo, but it sounds like study showed promising results : ) http://www.cysticfibrosisjournal.com/article/S1569-1993(14)00310-5/abstract

Ethan, As someone who has always been very cautious of drugs and their side effects, I can certainly understand your hesitation with starting a new drug. However as you make this decision, please keep in mind the safety profile of Orkambi. Compared to other drugs that CF patients are treated...

Hmm… I tried sending again- I'm still getting same error message.

Just to clarify- you need to have one df508 mutation and one of the listed residual function mutations to participate in 661-108 study. I'm so sorry if this wasn't clear. I hate to get someone's hopes up only to have them dashed. I just edited my original post so there isn't any further...

Aboveallislove, Just tried to PM you and received the message:Aboveallislove has exceeded their stored private messages quota and cannot accept further messages until they clear some space. Looks like you're very popular : ) Let me know when you clear some space and I'll try again.