This style of information delivery is very helpful for the patient population. A top research doctor and an experienced patient/advocate/commentator discussing up to date treatment insight in an understandable way that is very clear and consise. Thank You.
I am on watch and wait.I am 59 years old.I think with the newer drugs a person may be better off to start treatment at a younger age where their body can hold up better to the treatment and get in remission.That is my opinion.
Hi Joe, that is similar to what we've heard doctors say, as well - age is one consideration for how well someone can tolerate treatments, especially aggressive ones. Thanks for your comment! -Stephanie
Hi Joe, I hope you are well and still on watch and wait. It’s frustrating I know, I went through a few years ago. Hopefully you are one of those 20% that will never need treatment but they will not start treatment on you unless the CLL is progressing as the data shows that starting treatment at that stage doesn’t benefit the patient or the outcome. I was in a clinical trial 3 years ago and unfortunately I got the short end of the stick and finished in the group that received standard chemo immunotherapy. I’m still in remission at the moment but it has been a total nightmare in terms of serious complications (too many to list, honestly). People in the other 2 groups (venetoclax and acalabrutinib + oz…) were in remission after 4 months and with minimal side effects. Keep positive and stay strong 🙏
@@paolocardinali3951 Hi Paolo,i am still on watch and wait.I am trying a few things and my numbers are a little better.I am trying a plant/herb called sweet annie or wormwood and i just added funigreek and metformin.Also an antiviral drug called inosine pranobex that raises natural killer cells,i got it on amazon.
@@joeeastwood3795 glad to hear that your numbers are better and you are still on watch and wait. Hopefully you’ll never need treatment. Keep yourself well informed and find a good haematologist, it’s the best thing you can do. All the best 🤞
Hi, I have a question for you guys. I just noticed that I have over 20 small bumps all in a big cluster in both sides of my groin. Also have 2 small ones under my chin. Is this definitely lymphoma? Are there any other things this can be? Keep in mind they are very small, decently hard bumps in a cluster in my groin. I noticed like 2 bumps a few years back and now there’s a whole bunch. They haven’t grown in size, but they have definitely grown in number. I was also wondering is 5 years too long have lymphoma before you find it? If so, what is the amount of time you need to find it in, in order to be able to survive. Thank you for reading. -Max
Max, so sorry for the belated reply. We don't provide medical advice and definitely not for diagnosis - if you have symptoms like this, it's best you make an appointment with a professional medical team. Thinking of you. -Stephanie
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This style of information delivery is very helpful for the patient population. A top research doctor and an experienced patient/advocate/commentator discussing up to date treatment insight in an understandable way that is very clear and consise. Thank You.
Thank you, John! So glad it's helpful.
I am on watch and wait.I am 59 years old.I think with the newer drugs a person may be better off to start treatment at a younger age where their body can hold up better to the treatment and get in remission.That is my opinion.
Hi Joe, that is similar to what we've heard doctors say, as well - age is one consideration for how well someone can tolerate treatments, especially aggressive ones. Thanks for your comment! -Stephanie
Hi Joe, I hope you are well and still on watch and wait. It’s frustrating I know, I went through a few years ago. Hopefully you are one of those 20% that will never need treatment but they will not start treatment on you unless the CLL is progressing as the data shows that starting treatment at that stage doesn’t benefit the patient or the outcome. I was in a clinical trial 3 years ago and unfortunately I got the short end of the stick and finished in the group that received standard chemo immunotherapy. I’m still in remission at the moment but it has been a total nightmare in terms of serious complications (too many to list, honestly). People in the other 2 groups (venetoclax and acalabrutinib + oz…) were in remission after 4 months and with minimal side effects. Keep positive and stay strong 🙏
@@paolocardinali3951 Hi Paolo,i am still on watch and wait.I am trying a few things and my numbers are a little better.I am trying a plant/herb called sweet annie or wormwood and i just added funigreek and metformin.Also an antiviral drug called inosine pranobex that raises natural killer cells,i got it on amazon.
@@joeeastwood3795 glad to hear that your numbers are better and you are still on watch and wait. Hopefully you’ll never need treatment. Keep yourself well informed and find a good haematologist, it’s the best thing you can do. All the best 🤞
Es de gran ayuda estar actualizado sobre las novedades y tratamientos. Muchas gracias por compartir la información.
Maria, ¡Estoy tan contenta de que esto haya sido útil! También tenemos contenido en español.
www.thepatientstory.com/es/
- Stephanie
Maybe they will come up with an Mrna vaccine for cll.
Let's hope there was a lot of learning with the recent mrna vaccines to further the ones for cancer 🤞.
@@ThePatientStory 🙏
Hi, I have a question for you guys. I just noticed that I have over 20 small bumps all in a big cluster in both sides of my groin. Also have 2 small ones under my chin. Is this definitely lymphoma? Are there any other things this can be? Keep in mind they are very small, decently hard bumps in a cluster in my groin. I noticed like 2 bumps a few years back and now there’s a whole bunch. They haven’t grown in size, but they have definitely grown in number. I was also wondering is 5 years too long have lymphoma before you find it? If so, what is the amount of time you need to find it in, in order to be able to survive. Thank you for reading.
-Max
Max, so sorry for the belated reply. We don't provide medical advice and definitely not for diagnosis - if you have symptoms like this, it's best you make an appointment with a professional medical team. Thinking of you. -Stephanie