I am new to all this. My name Mary and I live in rural Victoria Australia.
I have got my results from a bone marrow biopsy. It states that the (results are consistent with B cell Non Hodgkins lymphoma). As it is still a couple of weeks until I see my oncologist again. Does this mean that I do have it or don't. I am so stressed. Not knowing is worse than dealing with the cancer itself. It would be great to hear from anyone who has this cancer to let me know. I have all the other symptoms as well.
I also have chronic fatigue syndrome.
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marycassar51
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I'm afraid I would interpret that as you do have it. Try not to panic as there are lots of great treatment options now. The waiting is the hardest until you go back for your next appointment but try and compile a list of questions you want to ask. Specifically, you might want to ask what subtype of NHL you have as there are lots of different lymphomas and Leukaemias that often fall under the Non-Hodgkin Lymphoma umbrella.
Hi Mary, the bone marrow sample is one of the tests to diagnose lymphoma. It can tell whether the disease is present in your bone marrow. There will usually also be PET/CT scan and detailed blood tests to see whether and where the lymphoma has spread as well as physical examination for enlarged lymph nodes. I know its very hard to stay calm but remind yourself that this is a very treatable illness and people can now live with it for many, many years
If I could go back and advise myself when I was diagnosed I would say - "eat well , sleep as much as you can, and get outside even for very short walks. This will often be a marathon, not a sprint and the more you learn about it and the healthier you can make yourself, the more in control you will be - and the stronger you will get". Others will have lots of suggestions for coping too.
I completely understand your stress with waiting for results. The fact that it's a couple weeks until your next appointment shows that it's not an emergency situation - possible an indolent (slow growing and very treatable) condition. Eat healthy, rest often and keep doing whatever you enjoy to pass the time. Please keep us posted.
Please don't worry! Not knowing is stressful, I know. I have Bcell NHL, was diagnosed in 1994, am at stage 3 but last relapse was in 2005 and I am doing quite well. I had the usual radiation and chemo, also a stem cell transplant in 1999. That seems to have helped my life long history of a low immune system. When you see your oncologist he will have a protocol all worked out for you so wait till then. There will be fatigue involved, maybe nausea but it can be controlled ( I had minimum), hair loss, but who cares! I either wore scarves or a knit cap if it was cold, or went bareheaded. Tried a wig but pulled it off at work, it was binding around my forehead and told my boss, this is! what it is!! My best to you! I'm 81 and my dad always said, it'll all work out", and it did.
FYI, my older daughter was diagnosed with same thing at age 9 in 1974. We spent many days and weeks at St. Jude Children's Hospital in Memphis. She did quite well but developed liver cancer at age 50 and passed within 6 weeks. That was more devastating than anything I ever dealt with. Supposedly it metastasised from a lobular breast cancer that went undetected. That leaves us with the big question - How, Why?? Too late now.
I have 4 grandchildren and a wonderful son in law and a younger daughter.
Sorry to hear about your loss. I lost my mother last year due to pancreatic cancer. She only lasted 8 months after being diagnosed. She was 78 years old. I knit beanies for the homeless and I have knitted quite a lot for myself. I have curly hair and I joke about that it may grow back straight. I will have to knit some new ones maybe rainbow colours.
Thank you. If you lose your hair it'll probably come back curly, or maybe not!! The first time it started coming in with a tiny curl but as it got longer, it was as straight as always and just as thick! However, the second time it is now wavy on one side and straight on the other side! And Its a real problem to take care of. I will have a haircut tomorrow - short!
Hope you get the hair cut that you want. People have their hair done any way these days. There is really no normal way anymore. Any colour as well. Don't know about bright red, wont go for that one. I have seen some young girls with bight pink Haha . Maybe I am old fashioned but pink omg!
Hi Mary - I was diagnosed with small Bcell NHL in January 2015 and had chemo (no radiation as there were no tumors). I had 5% of bone marrow involved and enlarged lymph nodes in my abdomen and chest. I did not lose my hair at all, but I developed some odd little, what I call sprouty bits which have now calmed down. I went back to work full-time April 2016. I still tire easily, but I'm trying to eat healthy and get a bit of exercise to get back into shape. It is a slow progress, but there is progress!! Try to find the blessings where ever they fall and surround yourself with positive people and positive things and experiences. It all helps. Hope you get your diagnosis soon and that it is a good outcome. Take care! - B.
My uncle passed away with cancer last week. His funeral was today. So I am lucky to still be OK. I am still on watch and wait as I do have NHL in my bone marrow. Next appointment is June.
I have b-cell NHL. Agreeing with Pinkvixon. Do not panic. Lot's of good treatments out there. I was diagnosed in 2010. Bone marrow involved. or cancer in the marrow.
The only symptom I had was severe fatigue and noticed a few large lymph-nodes in my neck. Yes can't help but be stressed when the big C is in a diagnoses.
Thanks, Hope all is well with you. I have been doing my research lot of new treatments out there. Have a really good oncologist. I was being tested for Multiple Myeloma because I have a lytec lesion on my left hip. Being told they think it is benign which is great. But still causing a lot of hip and bone pain down my leg. Hope to get to the bottom of this and they do something about it. Even the strong pain patches are not working.
Most lymphoma patients need a lymph node biopsy to correctly diagnose which of 60+ types of lymphoma. And the treatments differ greatly with the specific type of lymphoma.
Hi,I have T-cell NHL Was diagnosed and told it's incurable that my life expectancy could be from 2 1/2 to 20 years. Jokingly I told oncologist I'd take 20! In November that year family and friends threw a huge music benefit for me , so I could have alternative medicine as well as chemo. I started keeping a list as people started passing away from various illnesses, that were associated with me or my family that took part in the benefit , when I reached 20 I stopped. The reason I'm sharing this is to give courage to those of us that get down and depressed about our illness. Remember we don't know when our time is up! Just try to enjoy the daily things that put a smile on your face. Spend time with family and friends that care and let God do the rest! There is hope!!!
That's fantastic. No one knows when their time is up, I say to people well I could get run over by a bus Haha. Just keep going day by day and life will be better.
My name is Ruth and I live in rural southern Ontario, Canada. I was diagnosed with Diffuse Large B-Cell NHL in early 2012. It took several months (4 to be exact) to figure out what was going on, so I totally understand that "non knowing" feeling. As it turned out, after an MRI, I had a 9.5 cm 'lesion' on the iliac wing of my pelvis (hip bone). It pressed on nerves which caused severe nerve spasm pain. When it was finally determined with an ultrasound guided biopsy what the lesion was, it came back as the "type" being Diffuse Large B Cell NHL. It was a very fast growing tumour, so they told me even though it was very large, it was Stage 1. I was referred to an oncologist who took it from there. By the time I started chemo 8 weeks after the MRI, the tumour was much bigger. I underwent 8 rounds of chemo to shrink the tumour and 20 radiation treatments, because the tumour being so large (called "bulky disease"). They do the extra radiation as a safeguard when the tumour is larger than 5 cm.
I had never heard of this before, but what an education it was. There are many types of NHL. What really got me in the beginning is wondering what on earth was happening to me? I thought I had bone cancer, considering the pain I was having. When I found out what it was, I could give it a name, read up on it and find out that NHL is one of the cancers that is treatable with a good success rate. When I read most people's storys on this site, most have a 'watch & wait' diagnosis. I have not read of anyone with Diffuse Large B Cell in the same area of the body as mine. It's weird, but I guess I'm special. lol However, I have 2 friends who were diagnosed with the same type (Diffuse Large B Cell), but one had it in her spine, and the other had it where the small intestine is connected to the large intestine. We're all still alive & well !!!
I'm happy to say I'm doing very well and with it being just over 5 years since treatment began, I consider myself very lucky. I've had some side effects which I have to live with and keep trying to stay healthy and active. Unfortunately, I lost my twin sister to breast cancer in 2001. She was 52 years old. She had a very aggressive type and only lived for 2 years after diagnosis. I'm now 68 and enjoy being retired. I love to paint, I go to aquafit twice per week, and have 8 grandkids who keep me busy, and laughing.
Good luck to you and keep asking questions until you get all the answers you need.
I first went to a rheumatologist he said I have a lytec legion on my left hip. It looked quite big on the xray. He also said the blood tests results we multiple myeloma. In the morning when I wake up I can barely walk, my feet, whole leg, hip and pelvis feels like it is on fire and the pain has me walking doubled over.
It gets a bit better as the day goes on, by night time it aches a lot. I have my glands or lymph node (not sure which ones) feels really large all the time. I feel like I would not be able to swallow properly. They also hurt a lot. I am also very constipated and have to have tablets to help me go. I get night sweats, itchy skin, abdominal pain.
I was sent to an oncologist who said I have a small cluster of B cell nhl in my bone marrow test. So he has put me on a watch and wait. He also told me to go back to the rheumatologist. I don't understand as the rheumatologist said I do not have arthritis. ???????????
I am very fed up.
Thank you for your advice it is so great to hear from people with the same problems. It give hope
When I was in so much pain, I tried ice packs which helped a little. Also, some stronger pain medication took the edge off. I can't tolerate codeine, so I avoid that. Two weeks before I started chemo, my oncologist put me on Prednisone. Within 48 hours, my pain was gone. For me, it was a miracle. My oncologist actually apologized for not putting me on it sooner. It was a tough wait, but in the end I felt so much better. I would take your advice from the oncologist who will keep an eye on you and decide what to do next.
Keep us posted on how you're doing. We're all in this together, and it's nice to share our stories.
I cant tolerate codeine because of my bowl problems. I tried Prednisone but gave me severe stomach cramps. My Gp put me on Palexia they are taking the edge which is good. Able to walk a bit better.
Anything with codeine sends me hyper so I cant take them at night. Great for during the day though.
It's interesting how we all react differently to certain medications. Codeine for me makes me feel like I have cobwebs or a weird cloudiness in my head. I took something called Tramadol which is very strong, but without codeine. Prednisone is one of those things that either works well, or can't be tolerated. I was lucky it was my saving grace when I needed a break from the pain.
I agree this is a great place to have good discussion about our unique problems. I was just talking with a friend about this site and mentioned how positive everyone is and we get the encouragement we all need to forge ahead.
I have follicular , cell B, Non-Hodgkin's Lymphoma, stage 4. It has invaded my body and a life I loved. But, I am not giving in. Will continue to fight and embrace my new life when I have done all I can do. I continue to pray for all of us. We probably have more options than those before us. I am very grateful for that.
I was definitively diagnosed with the bone marrow tests. Later after treatment, even four to six years later after your remission,, they give the tests once a year to see if the small cell nonhogekins lymphoma is back again.
Or, presented itself in the bone marrow again. . Bcell is different.... However, the bone marrow tests are informative to your oncologist along with blood tests. Even after remission, they will test you a few times a year.
Don’t freak out.
Make sure your doctor is kind or find another. Ask questions. Chemo is a drag but it too will pass. The blood cancers are good in that you aren’t given radiation.
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Hope you get your diagnosis soon and that it is a good outcome. Take care! - B.
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