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!   ... View more

Hey Koala 27 years 🙂 ... who knows what the reasons are. Hopefully, one day someone will find it! ... View more

Sounds a bit of a worry, not that I know much about it. ... View more

Hi DI, Sorry I see this so late. The first phase is very hectic and your husband will be under crazy mental stress. It happened to me recently. In this state of mind we are very vulnerable and easy to abandon rational thinking. Many if not most people go in an irrelevant direction that is some cases is also dangerous. I would advise to help him reach the same conclusion I reached in the first week: The fact that I was unable to make any rational decisions for several months until I come to terms that I have cancer, and my life has changed. The other part is addressing the question of 'why me' which is haunting and burns pretty much all the available mental capabilities. The other problem is the inability to make any medical decisions. I can tell you what my opinion on all this is and this is a personal opinion that might be right or wrong. Consider this as a freedom as expression information coming from somebody that is a patient and spent time trying to make sense of all this. Before getting into that a couple of facts that are relevant for this type of cancer: All or virtually all lymphoma patient are phase 3 or 4. Should you be told you have phase 2 ask for a second test because you were mostly likely misdiagnosed. This information is pretty much irrelevant as far as the diagnostic is concerned so dwelling on it is useless. Lymphoma is an indolent cancer which after taking away the pompous talk means is slowly developing. The current average life expectancy is almost 10 years. As with any average it really means that we can die in a couple of years or live for 30 years. Of course we would like to think we belong to the last category :) Lymphoma as pretty much all cancers is incurable. Don't believe people that say cancers are curable. They are virtually not. For people that can use radiation or surgery it means postponing the return of the cancer for a period of time after which it returns. That is due to the mechanisms that govern the cancer. It usually does not mater too much who is your oncologist initially. If the symptoms are life threatening like fever you have to start a treatment. If not you can choose to wait or to start a treatment. No choice there. If you have no choice or decide to start a treatment it will inevitably include Rituximab. That is a drug approved in US in 1970 (or something around that) and it's one of the first truly genetic drugs in the world. The patent is due to expire on this drug so the company is in third phase trials with second and third generation similar drugs. You are Australian so unless you find a way to push the government you will not have access to either second or third generation. Traditionally the treatment also includes CHOP which means Chemotherapy. There are a lot of discussions out there is there is life worth living after CHOP. I personally am trying to avoid this as hell because is irreversible. If you have no chance and take it consider a sperm bank visit. If you could get on a Bendamustine trial instead of CHOP it might be good. I would do that if I were to believe that a form a chemo is necessary. Both Chop and Bendamustine are chemotherapy, the doctors don't know why it works and in principle kills cells. In the process it kills a lot of cancer cells and other completely unrelated cells. Thats why you loose your hair etc. Bendamustine has been in use since the late 60s and it has less secondary effects. Because it was produced initially by Eastern Germany US and EU companies could not easily make money from it's commercialization because they could not take a patent. That kind of speaks volumes about how pathetic the Cancer patients are cared for. At this point it has been in trials pretty much all over the world for several years including in Australia. If I would have not threatening symptoms I would just go for Rituximab. Unfortunately the system does not pay for it unless you also do CHOP or Bendamustine so you will have to fork about 8000 (I was told) from your pocket. I guess this will drop to a couple of thousands once it runs out of patent in less than 2 years. The thing I would recommend the most is to request of a gene expression test done on the biopsy. They will probably say that is done only in research so they will not do it and in my opinion that would pretty much destroy your chances for the future. A word about coping strategies: Some people turn to religion Some people turn to meditation Some people turn to sports and exercise Some people turn to healthy diets and herbal medicine Some people will deny that they have the disease Some people will go into weird remedies Some people will turn to some form of violence Some people will try to understand the disease Some to a combination All these strategies work in the sense of giving your husband and you the peace of mind. Most of these will make no difference to the disease. A word of caution: Ritaximab is a MAB type of drug that pretty much uses some things called antibodies to attach to B cells (antigens in this case). The attachment usually triggers a mechanism that kills the B cell. That means that this drug kills B cells indiscriminately so bad and good cells. This is much better than chemo but is still not specific enough to kill only cancer cells. Once you finish this phase we can talk more. All the best to you, Koala ... View more

Hi Janet, It's kind of inevitable to think about cancer about 90% of your time especially at the beginning. That would drain you emotionally, mentally and physically. It did happen to me and I believe it happens to everybody. There are several coping strategies that I saw: Turn to religion turn to meditation turn to natural remedies turn to exercise turn to diet turn to healthy food including things like juices natural extracts etc turn to learning about the disease turn to violence turn to denial turn to things most people will label weird stuff Most important is to restore your peace of mind to some acceptable level so pretty much all of these will help in that respect. Most of these will have no medical impact but the mental impact will be great and that will yield physical benefits. Another important thing that few people will tell you is that most likely nothing you did caused the cancer because to a good extent cancer is inevitable. Anybody telling you differently is ignorant or ill intentioned in the matter in my opinion and that is based on my research. All the best, Koala ... View more

After a lot of research reviewing a lot of facts about these studies I reached the conclusion that these studies are not worth participating in for two reasons: 1. They are not aimed to find any new treatment that could save our lives 2. They take money from the pretty small pot to the detriment of valuable research that could result in a treatment that saves lives. In principle it seems that most of those studies are just done to further somebody's academic career because they are needed for promotions. That is the conclusion I reached based on following up results of many of these studies. ... View more

Hi!!!! Good to hear from you! Sorry I haven't messaged you back for ages- I didn't see your message. My husband is doing spiffingly well- so much so that he 'accidently' rode around Port Philip Bay on Sunday (He was riding to Frankston with some mates, and they decided to take the long way home!) How are you? I hope you've been well. What happened with your treatment? Have a great New Year, I hope 2016 is a stellar year for you. Cheers and champagne bubbles, Emily ... View more

Hi, I had NHL when I was 21 a year and a bit ago. I had primary bone DLBCL which is rare. The R-CHOP and radiotherapy treatment was very successful and I am clear. I am open to any questions that might help you or anyone else. ... View more