CLL treatments in France

[Minou1]

Hello, is there anyone on this forum who has experience or knowledge with CLL and France. My husband was recently diagnosed and we are looking for any info out there on how treatment and monitoring work here. We are equadistance between Bordeaux and Toulouse but his first appointment is with a hemotologist in the oncology dept at Brive hospital.With gratitude

[AussieNeil Administrator]

I'm bumping your post back up into Newsfeed to give it more attention. We do have a few members in France and with your good self explanatory title, I had expected you would have had a reply by now.

Neil

[julienpr]

I live in Marseilles and am treated at Paouli Calmette cancer institute. At 68 or 69 years old I was given CR chemo and it has been perfect over the last 3+ years. My understanding is that PCalmette is the leading CLL hospital in France and one of the top in all Europe.

[Minou1 in reply to julienpr]

Thank you for your reply and for sharing your treatment protocol. We dont know if he will need treatment yet but want to be sure he gets the right care because in 2020 my husband was diagnosed with HF (heart failure) and low EF (ejection fraction) and had an ICD implanted. With good nutrition, targeted supplementation, plus good medical care, his EF went from 20% up to 40% and he is fit and living a normal life but some of the CLL treatments can speed up HF so naturally we are concerned.Do you know if we are allowed to request a referral to another clinic that specializes in CLL based on circumstances like my husband's?

What a coincidence we visited Marseilles this past weekend.

With gratitude

[Drayton1]

I also live between Bordeaux and Toulouse. I was diagnosed just before moving to France 8 years ago and was on watch and wait until treatment last year. I was monitored by a specialist at the Agen hospital, with all blood tests and scans free, because CLL is a condition of long duration.I received 6 months of FCR last year, which was very successful, and have been monitored closely since. I cannot fault the treatment I have received.

You may also want to check both Bordeaux and Toulouse both of which have specialist cancer hospitals.

Wishing you well and hope my story is reassuring.

[Minou1 in reply to Drayton1]

Very helpful. Thank you so much. I agree with the medical here being very good and far superior to where we come from. Regardless, it sounds like the CLL care in France is reliable and we can let our clinic do what is necessary next month when he has his first appointment. More importantly is that we will not be alone bc others have shared their CLL journey in France. Thank you

[CLLerinOz Administrator Volunteer]

This resource may help you identify centres of excellence in your region:

ellye.fr/en-region

CLLerinOz

[RosettaClapp]

we have a house to the west of Bordeaux and our centre is Bergonié centre in Bordeaux.I was hospitalised three years ago and found that the French protocol although similar to the uk one they seem to start treatment earlier

[scryer99]

The clinical trial database does show French hospitals running CLL-related trials. Probably not a bad starting point.

clinicaltrials.gov/ct2/resu...

[hervec]

Bonjour

if the CLL case is standard any hospital in france with onco hemato division will be efficient. Venetoclax/ibrutinib/acalabrutinib and FCR are available. Any local pharmacy will deliver these drugs. BUT if your case is more complex Toulouse hospital has best specialists

iuct-oncopole.fr/le-departe...

Herve C

[Minou1 in reply to hervec]

Merci beaucoup! My husband's first appointment is June 22nd in Brive. We should know more about his situation by this summer but with his current low EF and HF, Toulouse my be his best option for combination care as they have the best cardiology centre at the university hospital there.

Thank you for your help.

[shoppingtrolley]

Hello there - my OH was diagnosed with CLL in 2014, underwent FCR in 2017, nearly died from terrible Covid in 2020 - am hoping there's not a 3-year pattern occuring now!

We live near Pamiers, approx 45mn south of Toulouse, and his care is at the IUCT Oncopole in Toulouse. They monitor him closely - sadly he now needs regular blood transfusions, but we're hoping they can sort out a new treatment for him. It would seem that Covid has changed what the CLL is doing, so it has become atypical. It's all a bit of a worry, but the care is very good.

[Minou1 in reply to shoppingtrolley]

Glad to hear you feel comfortable with the care. I agree w your comment about Covid. We have had a similar experience.

[LisaAlice]

hi, Minou, yes, I have experience with CLL and France. I was diagnosed 3 years ago, on watch and wait. I’m not in your region so am not familiar with the care there. I’m in Normandy. But I can give you help on a general scale . Let me know what questions you have and I’ll try to help. There is also a great organization called Cancer Support France. All the best

[Toothdoctor]

I have been in nutrition for 52 years as my son Jason had GSD 1a. It is my fiance who is the toothdoc in Los Angeles. I would love to correspond with you on or outside the forum, your choice. We follow mainly a plant-based diet and many supplements to keep our immune system strong. The toothdoc also has prostate cancer and he just turned 80. We have a stepdaughter living in Paris and friends also. Best always s.j.s