My husband was diagnosed 3 weeks ago with lymphoma after nearly two years of feeling unwell and much persistence with several GPs and specialists to work out what was wrong. Since then, we've been upgraded every week and he has now been diagnosed as a stage 4 at the ripe old age of 49, it has been just a crazy couple of weeks and we were refers to our current oncologist by his throat and neck specialist. The whole set up comes across as being old and we really want to ensure we engage a progressive carer for him as we feel we are being steered straight to R CHOPS.
Can anyone point us in the right direction or share their experiences. Are there any hospitals/practitioners anyone can recommend? He believes in mind and body and wants to invest in yoga and diet to increase his chances of fighting this.
We live in Bayside Melbourne.
Any advice or help is appreciated.
Hi Di, my story is very like yours, except my husband's diagnosis took 6 months. He was 39 when he was diagnosed with stage IV Follicular Non Hodgkin's lymphoma. The head and neck surgeon at the Royal Melbourne Hospital referred him to Professor Andrew Roberts, a Haematologist, and we've been really happy with him. That was in April 2011. Chris was offered the opportunity to be part of a medical trial, which involved RCHOP or another drug, Bendamustine. He took part, was given Bendamustine, and the results have been great. He's riding his bike around Port Phillip Bay with a group or cycling friends tomorrow!
Ironically, a friend of ours was diagnosed with Follicular lymphoma last year, stage 2 I think, and was put on watch and wait. She started RCHOP on Tuesday, after a slow advance in her lymphoma. It's the preferred treatment for this disease, and has produced some good results.
I wish you and your husband luck with everything. love Emily
Thanks Emily, I appreciate it. will look up Professor Andrew Roberts. Did he have his treatment at Royal Melbourne Hospital? And did you also attack it from a diet perspective.
PS I hope he enjoys his bike ride tomorrow. Mine's a cyclist too except he gave it away after our son came along and life got too hectic!
Hi Di, Chris did have his treatment at RMH. Which hospital has your husband been linked with?
Chris didn't follow any particular type of diet, except that he had to maintain a 'pregnant woman' diet while he was having chemo (no mouldy cheese, fermented meat or raw meat), because his immune system was suppressed. Apart from that he ate what he felt like. I haven't heard of any diet or food that can be used to cancer- what are you referring to?
I think Chris will enjoy his ride, except that he's leaving the house at 4.30am(!!!!) I think I'll turn over and have a smug giggle before I go back to sleep. Have a great weekend!
We've been doing a lot of research into natural therapies to compliment treatment and to equip us to deal with the side effects of chemo e.g. yoga, meditation etc. My friend referred to me the Shannon Harvey site theconnection.tv which talks about mind and body and we've also looked at Tylertolman.com and he recommends changing your diet and holistic treatment. The 2 things which seemt to be consistent across multiple such sites is dandelion root extract tea and frankincense oil.
My hubby has been referred to Epworth Freemasons.
It's probably best to discuss these ideas with your Oncologist, as chemicals can interact and may end up counteracting each other. I have to come clean at this stage and say I used to be a Nurse, so I align myself with Western medicine, and don't know much about alternative thereapies. Just make sure that the people you take treatment advice from are well respected in their fields, with demonstrated good results. Good luck!
This book called "Cooking with Foods that Fight Cancer" by Richard Beliveau and Denis Gingras is an excellent resource. I bought my copy from here http://www.bookdepository.com/
I would only use this in conjunction with the treatment recommended by your oncologist. I had CHOP (no rituximab) and have been in remission for 18 months.
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,
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