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I just can't stop worry. Waiting on BM biopsy. Is it Possible ?

Bill_NC's picture
Bill_NC
Posts: 109
Joined: Jan 2013

Hi All, I have been diagnosed with NLPHL stage IIIA so far, one under armpit , one in nick and one lymph in the pelvic area. Did Bone Morrow last week and waiting for biopsy results. My anxiety growing by the hour that the disease have spread to the bones. And even getting more worry that the chance of having different type of bone cancer. Is it possible? 

My oncologist said that having a different type of cancer happen 1 in 100,000. And I feel lucky Cry , after all I was one of the 5% to catch this rare HL.

DadysGirl
Posts: 315
Joined: Aug 2011

Don't worry. Please try to stay calm. Even if it has spread to bone marrow they will treat it the same way. Only God knows what is planned for all and sometime we worry ourselves so much unnecessarily. You must have seen people in such a bad shape disease  wise get better and those in great shape disease wise fail against their disease. My wonderful Dad was one of them. We ran into so many patients at the hospital and they were so worried and they used to ask my Dad how can he be so together. He used to say I'm getting treatments not to extend my life on earth but to live the life God has given me in a healthier way. My Dad was such a wonderful Dad and a person. It's not easy to be calm but we have no control over anything in life. We do what needs to be done, we pray a lot and leave the rest to God. Life is a longer version of a dream... We were so excited when my Dad's bone marrow was not involved back in May 2012 and I hope you will be just as excited with negative bone marrow involvement news..

Regards...

illead's picture
illead
Posts: 505
Joined: Aug 2012

I just read up on your type of lymphoma and it is very curable.  I know how scary you feel, but try to relax and believe us that lymphoma reacts very well to chemo.  My husband has a rare form of NHL and his bone marrow was 90% packed with cancer.  His blood count was down to 1.6.  He had lost 50 pounds and could barely walk or talk.  He was near death.  After 7 months of chemo, he was in remission and will be a year in Feb. and he feels great.  Hodgkins is much more cureable than non-hodgkins so you are very fortunate.  It is just so hard to wrap your head around having cancer, but just know that you are in good hands.  They know so much more about many cancers now and lymphoma is being highly researched.  Come here anytime and vent though, we have all felt the way you do and we understand.  Hang in there, Bill and Becky

po18guy
Posts: 237
Joined: Nov 2011

While anything is possible, all types of Hodgkin's are well known and treatment has long ago been standardized. New treatments are appearing and others are in the pipeline. Hodgkin's lymphomas have an 80%+ cure rate. And, some that are not curable are manageable. Lymphoma is easy to treat - even in the bone marrow.

The following will help to explain my perspective. After more than two months seeking a diagnosis, I heard: You have an unknown sub-type of a rare, T-Cell non-Hodgkin's lymphoma. It is highly resistant to chemotherapy. The prognosis is poor. There is no standard treatment for it. A clinical trial is recommended, but none is available. Even if it responds to treatment, it is expected to relapse. It cannot be irradiated, as it has spread too far. It is in your bone marrow and you have "innumerable" cancerous lymph nodes throughout your body. Your "B" symptoms lower your prognosis. (Then, after four months of aggressive treatment with eight different drugs) A relapse within six months of treatment drops your prognosis to very poor and you have relapsed immediately, if the cancer was ever gone. There is no therapy left with any hope of a remission, let alone a cure. You have a few months to live. We can offer salvage therapy and palliatve care > hospice.

Not the exact words, but the exact meanings. And, this was at one of the pre-eminent cancer research centers in the nation. How's it sound so far? Yet, this all began almost five years ago. A clinical trial miraculously appeared and I have had no evidence of disease for almost four years. So, do not panic, keep that chin up and try to stay off the web, as Dr. Google always hands you bad news.     

Bill_NC's picture
Bill_NC
Posts: 109
Joined: Jan 2013

Thanks po18guy for the inspiring story.

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