Rahab
July 14th 2006, 03:03 PM
This thread is meant to be an exchange of information and support tips for lymphoma patients. If you or your loved one was diagnosed, do not hesitate to participate in this thread. Share your resources, results of your treatment and more importantly how you are emotionaly dealing with it.
It has come to my attention recently in a conversation with my oncologist, that the incidence of lymphomas in the US population has doubled over the course of the past 10 years. So, I do not take for granted the potential for folks in the age range of 45 and over to be developping any forms of the NHD lymphoma.
Mostly asymptomatic, that cancer of the lymphatic system is often detected as the result of a physical where swollen lymph nodes are observed. In more advanced stages, bouts of fever, night chills and sweats, fatigue, loss of weight can also occur.
Is there a higher risk category of folks? From the literature I have studied, people who worked in agricultural environments have a greater risk because of exposure to pesticides. Folks using industrial chemicals in their jobs. And, Ladies, the use of a red hair dye. Some statistics have shown a common denominator for the indolent (follicular) lymphoma among females having used a red hair dye for several years.
In any case, if you have observed some swelling or lumps near by your lymph nodes (check neck, groin, arm pit), please do tell your primary care physician. He/she ought to order further tests to confirm or eliminate the presence of a lymphoma.
Whether agressive or indolent, both types are easily treatable. Which means that remission is almost a guarantee. However, do not confuse remission with cure. The follicular type, for example, is not curable but highly treatable. I reached remission after one 4 week chemo treatment in July 2005. I am currently on maintenance chemo to keep me in remission.
There are three diagnostic tools that are indispensable for your oncologist to discuss various choices of treatments with you:
- removal and biopsy of the affected lymph node. A slice biopsy will confirm which type of lymphoma.
- PET Scan : will confirm staging from 1 to 4.
- Bone marrow biopsy: usualy ordered if stage 3 or more.
The choice of treatment is yours to make. Educating yourself on your illness will be vital. The current research on lymphoma has opened the door to low toxicity chemo treatments such as Rituxan. Depending on your age, general health status, you may be a succesful candidate to such treatment. I had the option to go with the standard C.H.O.P (high toxicity) which has a succesful remission rate. I took the Rituxan option and became part of the 7% of follicular lymphoma patients who go in remission within one treatment.
Rituxan is a monoclonal who "flags" a specific protein on your white cells, sending a signal of "search and destroy"to your immune system. Tumors that have formed on your lymph nodes as well as all mature lymphocites B are attacked by your very own immune system (T Cells). It should not affect your white cell count as C.H.O.P does. Your bone marrow compensates by churning up new non contaminated lymphocites.
You get to participate! In fact, you become the Commander and Chief of your Armed Immune Forces. I had found that visualization of the battles raging inside my body played a role in my quick remission.
How do we deal with it emotionaly? The difficult aspect is the non curable one.... so far. So far meaning that a cure is on the way. It is sort of a "touch and go" each time as there is no guarantee timewise of how long you can stay in remission. Most indolent types resurge after a couple of years and are treated again. The more longevity you add to your life, the closer you are to benefit of a cure when found. The research is extremely active and working on vaccines, radio immunology etc..... If you need specific info on all that optimistic data, let me know I will redirect you to the medical sites I had consulted myself.
Do not hesitate to communicate with other lymphoma patients. You are definitly not alone. The Lymphoma Research Foundation has a "buddy" program where they match you by e-mail with someone who has your same type of lymphoma and is experienced in treatments etc....
There are some topics where communicating with others can really relieve us from emotional burdens such as : how do we share the news in a reassuring way with our children or spouse or relatives? Is it normal to be angry? Is there some counseling available? How do we deal with the fear of what is uncertain? Do we have a trust relationship with our oncologist? Are there tips on how to communicate with him/her so that every question gets an answer? (even if it is "I am not sure"). Everyone has his/her own struggles to share about and seek some support.
If you are too inhibited to share about your own situation, you can contact me on PM. I can share the same info I would share in the open. And I can equaly benefit of your own sharing.:smile:
There are several support lymphoma groups forums on line but I have found that most of them focus on worst cases scenarios and tend to motivate fear rather than inspire peace and confidence.
It has come to my attention recently in a conversation with my oncologist, that the incidence of lymphomas in the US population has doubled over the course of the past 10 years. So, I do not take for granted the potential for folks in the age range of 45 and over to be developping any forms of the NHD lymphoma.
Mostly asymptomatic, that cancer of the lymphatic system is often detected as the result of a physical where swollen lymph nodes are observed. In more advanced stages, bouts of fever, night chills and sweats, fatigue, loss of weight can also occur.
Is there a higher risk category of folks? From the literature I have studied, people who worked in agricultural environments have a greater risk because of exposure to pesticides. Folks using industrial chemicals in their jobs. And, Ladies, the use of a red hair dye. Some statistics have shown a common denominator for the indolent (follicular) lymphoma among females having used a red hair dye for several years.
In any case, if you have observed some swelling or lumps near by your lymph nodes (check neck, groin, arm pit), please do tell your primary care physician. He/she ought to order further tests to confirm or eliminate the presence of a lymphoma.
Whether agressive or indolent, both types are easily treatable. Which means that remission is almost a guarantee. However, do not confuse remission with cure. The follicular type, for example, is not curable but highly treatable. I reached remission after one 4 week chemo treatment in July 2005. I am currently on maintenance chemo to keep me in remission.
There are three diagnostic tools that are indispensable for your oncologist to discuss various choices of treatments with you:
- removal and biopsy of the affected lymph node. A slice biopsy will confirm which type of lymphoma.
- PET Scan : will confirm staging from 1 to 4.
- Bone marrow biopsy: usualy ordered if stage 3 or more.
The choice of treatment is yours to make. Educating yourself on your illness will be vital. The current research on lymphoma has opened the door to low toxicity chemo treatments such as Rituxan. Depending on your age, general health status, you may be a succesful candidate to such treatment. I had the option to go with the standard C.H.O.P (high toxicity) which has a succesful remission rate. I took the Rituxan option and became part of the 7% of follicular lymphoma patients who go in remission within one treatment.
Rituxan is a monoclonal who "flags" a specific protein on your white cells, sending a signal of "search and destroy"to your immune system. Tumors that have formed on your lymph nodes as well as all mature lymphocites B are attacked by your very own immune system (T Cells). It should not affect your white cell count as C.H.O.P does. Your bone marrow compensates by churning up new non contaminated lymphocites.
You get to participate! In fact, you become the Commander and Chief of your Armed Immune Forces. I had found that visualization of the battles raging inside my body played a role in my quick remission.
How do we deal with it emotionaly? The difficult aspect is the non curable one.... so far. So far meaning that a cure is on the way. It is sort of a "touch and go" each time as there is no guarantee timewise of how long you can stay in remission. Most indolent types resurge after a couple of years and are treated again. The more longevity you add to your life, the closer you are to benefit of a cure when found. The research is extremely active and working on vaccines, radio immunology etc..... If you need specific info on all that optimistic data, let me know I will redirect you to the medical sites I had consulted myself.
Do not hesitate to communicate with other lymphoma patients. You are definitly not alone. The Lymphoma Research Foundation has a "buddy" program where they match you by e-mail with someone who has your same type of lymphoma and is experienced in treatments etc....
There are some topics where communicating with others can really relieve us from emotional burdens such as : how do we share the news in a reassuring way with our children or spouse or relatives? Is it normal to be angry? Is there some counseling available? How do we deal with the fear of what is uncertain? Do we have a trust relationship with our oncologist? Are there tips on how to communicate with him/her so that every question gets an answer? (even if it is "I am not sure"). Everyone has his/her own struggles to share about and seek some support.
If you are too inhibited to share about your own situation, you can contact me on PM. I can share the same info I would share in the open. And I can equaly benefit of your own sharing.:smile:
There are several support lymphoma groups forums on line but I have found that most of them focus on worst cases scenarios and tend to motivate fear rather than inspire peace and confidence.