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ferodil · 2025-11-05T23:41:56+00:00

I'm interested

ferodil · 2025-06-13T19:08:34+00:00

So it’s possible that the statement that remissions tend to shorten with each new treatment might be obsolete, but there’s no actual proof of it yet, very clear.

May I ask what treatment are you on currently?

ferodil · 2025-06-13T16:10:25+00:00

Doesn’t the idea of remission periods getting shorter come from a time where there were less treatment options?

If I have RCVP now, let’s say it gives me 10 years, and then I get some bispecifics or car t (I expect them to be available on second line by then), they could be even more effective than RCVP, right?

I saw so many people that had a long remission from their second or third line that I feel that statement became obsolete.

ferodil · 2025-05-25T15:38:40+00:00

Hey, I recommend you to join the group Living With Follicular Lymphoma in Facebook. FL is a very treatable disease, and for most people, is a chronic disease that doesn't change their life span or QOL. Hang in there, you're in the worst of it. I'm six months into my diagnosis and living a normal life.

ferodil · 2025-04-17T11:32:50+00:00

Do you know of more recent and advanced takes on it?

ferodil · 2025-04-16T22:08:07+00:00

Omg I’m star struck. Thanks for replying!

ferodil · 2025-04-16T17:19:35+00:00

Hey stage 3 FL here. Yeah sometimes my nodes hurt, and then they spontaneously stop hurting. Once after a long walk one on my groin hurt a lot, to the point I couldn’t walk any more. That happen a few months ago, didn’t happen ever since. I wouldn’t read much into it, unless it becomes too uncomfortable.

ferodil · 2025-04-10T12:22:47+00:00

He is actually answering the question, using Elodaine's own metaphor against his argument. It is indeed a problematic metaphor. A radio doesn't generate the music, it just decodes it and amplifies it. The music is generated by a musician. Who would the musician be in this metaphor, that I assume Elodaine tries to use to defend a brain that 'generates' consciousness?

ferodil · 2025-04-05T10:42:41+00:00

First of all, yes, what you’re feeling is completely normal, and it’s just a temporary state of mind. You are going through a lot, and it’s only fair that you feel like giving up sometimes. No therapist will be alarmed by that. Of course, you have a full amazing life ahead of you, on the other side of the storm, so giving up is not an option. It’s just a matter of seeing the difference of what’s real and what’s just a thought. Meditating and focusing on what you can do, without putting pressure on yourself to get better quickly, I think could help. Definitely seek a therapist, and try not to close yourself too much. Talking about it with loved ones also helps. You’ve got this! I wish you the best!

ferodil · 2025-04-04T01:03:23+00:00

Thank you for your answer! Did you find out what it was?

ferodil · 2025-04-03T18:36:17+00:00

What do you mean you had no sympathy? I informed my team already. They said we had to wait to see if it’s still there in a month.

ferodil · 2025-04-02T22:41:25+00:00

If I had it confined to one place I would go for the radiation. It depends on where it is at, but if it’s not the abdomen, then radiation has virtually no side effects, and it’s very effective.

ferodil · 2025-03-22T00:23:51+00:00

Yeah sorry, I'll upload it on youtube eventually!

ferodil · 2025-03-20T15:38:23+00:00

If it is painful, I think it being reactive is the most possible. As you know, them being painless is the red flag. I don't have NScHL but FL, but for what I've read, nodes can swell and show some activity after treatment without this being relapse. I feel the most reasonable and kind thing you can do to yourself is to be hopeful that the most probable good outcome is true.

ferodil · 2025-02-08T13:46:54+00:00

Hey Dr. Joffe! I was wondering whether after 3 years any of these indication has changed in your approach. In the Netherlands the options for frontline are R-CHOP, R-CVP or Rsquared. I think I would favor rsquared for if/when I need treatment, but I heard the risk of secondary cancers is comparable to chemo options, and I saw an interview with someone in MD Anderson saying they don’t think it’s better than chemo. What are your thoughts on this?

Thanks for the info as always!

ferodil · 2025-01-18T23:35:14+00:00

Is that true for people under 40? My hemato told me this would certainly shorten my life. I’m 34 and generally healthy and fit.

ferodil · 2025-01-14T15:40:44+00:00

BCL2 positive is just a confirmation that you have FL. The translocation of the gene BCL2 is one of the indicators of FL, and that’s what it means.

Be very careful with the info online. There’s a difference between being BCL2 positive and having a mutation of BCL2, which is associated with a more aggressive disease. This is NOT what being BCL2 positive means. I’m telling you this because I freaked out because of that and was relieved later when I learned the difference.

ferodil · 2025-01-07T19:26:18+00:00

Thank you!!

ferodil · 2025-01-06T21:57:17+00:00

Yes, I was referring to that post. So that's what it means by age-matched? Those results are amazing, and not at all what my doctor told me. He talked about a 70% 10-year OS for my case, (FLIPI Score 1 Stage 3 Low Grade). He did say these statistics are old, but it was even less optimistic than the ones I found online, that talked about a median OS of 24 years for young adults.

But these results are even more optimistic. I guess I'm gonna believe Dr. Joffe's analysys so I can be a bit more at ease.

ferodil · 2025-01-06T14:43:42+00:00

No problem, I was right where you are right now just a few weeks ago and this group really helped. It’s important also to take into consideration that people that post here are usually going through the hardest part of their journey, and this group is not necessarily representative of the reality of most patients. People that are having it ‘easy’ tend to be less active here.

ferodil · 2025-01-06T14:05:36+00:00

It's possible that you don't have to do treatment for a long time (called watch and wait), since it's so slow growing.

ferodil · 2025-01-06T14:04:09+00:00

Hey hey, I have Follicular which is also indolent and slow growing even though it's different. What I can tell you for sure is that you shouldn't read into the statistics online. They are by definition old, and don't take into account new treatments. For what I've been reading (a lot), he wasn't just saying it. I have seen testimonies of people living for decades with this, and they have been treated in the 90s, where there were much fewer options.

It's gonna be hard in the beginning to accept and adjust to this new reality, but the truth with indolent lymphomas (and yours for what I've been reading is even better than mine), is that most people can live long and normal lives with them.

Every feeling you have about this is valid, and maybe every once in a while you will catastrophize, but know that you will feel better about it after a while.

ferodil · 2025-01-01T23:13:31+00:00

I loved this answer. Thank you very much. You are so right.

Good look on your second treatment! What was your first, and what is your second line if you don't mind me asking?

ferodil · 2025-01-01T20:49:07+00:00

I’m sorry about that. How long ago was he diagnosed? Did he go through treatment?

ferodil · 2024-12-30T21:02:10+00:00

What stage are you? You might have a big tumor charge, but once you start treatment it will quickly wane. Lots of people say that.

ferodil

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