Follicular Lymphoma

[Kazza155]

Hello I was diagnosed with Follicular Lymphoma on 19 December 2013. Is there anyone else who was put on the 'watch and wait' approach?

[Steve_127]

Hi Kazza Hope all is well I was also just diagnosed with Follicular Lymphoma early December 2013 They found I had swollen nodes in my Stomach and I am also on wait and watch find it hard to take just sitting and waiting I have seen my Gp to get second option and possibly find out more Regards Steve

[Kazza155]

Hi there Steve, Nice to hear from you. I also have swollen nodes in my stomach (an 'abundance' apparently, wish they would tell you how many that is) and a 3.5cm left supraclavicular node. You know I feel the same way about just sitting around waiting. I was so positive in the beginning and thought that I would be fine with it. I find it a blessing not to have treatment straight away and to give myself a chance to get as healthy as I can before that time comes but I certainly do have my flat days. The Cancer Council have been wonderful and I am actually seeing one of their counsellors tomorrow afternoon. I really didn't think I was worthy to see someone seeing I'm not at a stage where others certainly are but they explained to me that everyone's journey is different and this is the stage I am at right now. Even if I only need to talk to them a couple of times I think it will be beneficial. Let me know how you go with your GP. Regards

[Steve_127]

Hi Kazza Hope all is well , Just to fill you in on my journey so far ,I have had two lots of surgery last year one being a biopsy which came back negative and things looked good, my wife and I thought great news , untill I had a third C/T scan which showed the growth of the nodes in my stomach had growen over a three months period so I under went a laparotomy surgery in November where they removed 3 nodes from the Mesenteric area which came back with Follicular Lymphoma in December 2013. Enough about me, how did you go at your meeting , hope it was very benefical for you and has help you put things in place and answered some of those question / (fears we have) Like yourself I am have good and bad days, Haven`t had my second option yet still waiting to get a date will keep you informed Take care for now Steve127

[Kazza155]

Hello again Steve Lucky you had follow up CT to check on the nodes and they didn't leave it at the negative biopsy. My initial biopsy was negative as well then about a week later the Dr said that they had done more detailed tests with the sample from the FNA and it showed a large popularity of B cells suggestive of lymphoma. That's when i went on to have a further biopsy to confirm. Have you had a bone marrow test yet? No wonder we travel on a roller coaster of emotions. Weeks of tests and waiting for results which they want asap and then we get a diagnosis and nothing. Anyway, my meeting with the counsellor was great. she confirmed I was normal to have good and bad days. worked out (which I already knew) that my mind works overtime and that I need to have some time to myself. She directed me to the Cancer Council to get 2 cd's one mediation and the other relaxation. I have been forcing myself to sit and listen to either one every day and I find that it is very beneficial. I wouldn't have done anything like this before, I'm quite enjoying the quiet time. You should give them a go. Take care Kazza

[Steve_127]

Hi Kazza Just to catch up again,to answer your question I have not had a bone marrow test yet ,but I am see prof Gurney at Westmead in early March for my second option and hopefully he can fillin some gaps??? . Glad to hear you meeting was one of a helpful nature to you the CD sound good I am like you not one to just sit around but keep it up. I dont now wether it my change of diet cutting out oils and fats and varing my food`s to having more fruits, fish,and lean meats and Green vegtables instead of potatos or chips ,but I am now feeling Great touch wood. Hope you are well keep up the postive thoughts talk soon Steve 127

[Steve_127]

Hi Kazza Just to catch up again,to answer your question I have not had a bone marrow test yet ,but I am see prof Gurney at Westmead in early March for my second option and hopefully he can fillin some gaps??? . Glad to hear you meeting was one of a helpful nature to you the CD sound good I am like you not one to just sit around but keep it up. I dont now wether it my change of diet cutting out oils and fats and varing my food`s to having more fruits, fish,and lean meats and Green vegtables instead of potatos or chips ,but I am now feeling Great touch wood. Hope you are well keep up the postive thoughts talk soon Steve 127

[Steve_127]

Hi Kazza Just to catch up again,to answer your question I have not had a bone marrow test yet ,but I am see prof Gurney at Westmead in early March for my second option and hopefully he can fillin some gaps??? . Glad to hear you meeting was one of a helpful nature to you the CD sound good I am like you not one to just sit around but keep it up. I dont now wether it my change of diet cutting out oils and fats and varing my food`s to having more fruits, fish,and lean meats and Green vegtables instead of potatos or chips ,but I am now feeling Great touch wood. Hope you are well keep up the postive thoughts talk soon Steve 127

[koala]

Hi Kazza, I was diagnosed like you sometimes this January and recommended a W and W. There is no good reasons to think this is not a good approach. I do comparative ultrasounds every 3 months for the abdomen area and blood tests. I've been reading quite a lot about the subject and I will try to avoid at almost any cost (except for life) CHOP. If I'm lucky I'll get treated with the second gen Rituximab. There is quite a large volume of good info and quite a large number of useless fluff that's happening. Season's Greetings Koala

[P21]

Hi all, 

I've also been diagnosed with Follicular NHL. I'm in my early 40s (with no symptoms) and its been a shock to me to have Stage 3 cancer (I have lumps around every main organ and 20 or so in my neck and head area). I found out 6 months ago and was on watch and wait. I haven't used any of the Cancer Council's assistance so far but I need to as I'm struggling mentally. 

There are a few things that I'd love to understand about Follicular NHL and W&W:

1. Have you ever had your lumps disappear? My first lump I noticed and was the reason I got this diagnosis, has reduced so much it has disappeared (this is over a period of 6 months). My haematologist has said lumps increase and decrease, it doesn't particularly mean anything. 

2.  Has something assisted you in recovery/mentally?

3. Have you tried Keto and alternative therapy?

Thanks guys and stay safe/healthy!