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Hi All new to this site,
Have neck lymphoma, have had bone marrow taken, pet scan, lots of blood taken, two biopsys, ultra sound, and due to have heart tracing and ct scan, dont see consultant till 17th, glad i can still work to keep my mind busy,
Sorry that you find yourself here but you have come to a good place for support and understanding. If it is any comfort that initial diagnosis stage is really the worst as it is so hard not to worry. Once you have a treatment plan in place and things are underway you'll feel a lot better. Just take it one step at a time. We're all here for you.
Best of luck,
My wife was diagnosed with DLBC Lymphoma late July and has just completed her 3 rounds of R-CHOP chemotherapy. All in all she handled it really well and it was no where near as bad as we were expecting. I guess everyone handles it differently, but they really have the treatment fine-tuned these days and can manage nausea and side effects quite well. Good luck with the test results - be sure to let us know how you go and what course you are prescribed as there are many here that will have taken the same journey and can give you tips and support to help you get through yours successfully.
Dear Belle and Tom,
So glad to hear you are finished with the Chemo. I am really interested ,as my husband wa diagnosed with 1st Grade DLB Lymphoma, ( affecting one Lymph Node in the groin, which was removed surgically on June 19rtj) , in June this year and has been given 5 x R-CHOP Chemos but without the O as it affected his lands and feet, no feeings , still pins nd needles in the feet , although luckily his hands are OK. He was scheduled to have 6 cycles but since reading your letter we have made an appointment to see our Oncologist on Monday, as we think they are overdoing the Chemos, and we do not want any more..
What stage was your Lymphoma, Belle?and where was it?
Also interested that you are having a PET scan. What were the results of your first PET Scan. With my husband there was only the one Lymph node showing cancer on his 1st and only PET Scan.
Really looking forward to hearing from you and wish you all the very best with your PET Scan.
Camilla ( in Germany)
Hi Camilla, Yes Belle was stage1 Lymphoma. Doctors say that she found the lump in her upper thigh probably as soon as it appeared - it was the only enlarged lymph node, and it was removed for the biopsy about 4 weeks after she first found it. We would have liked it to be quicker, but between seeing the GP and then booking an ultrasound, going back to the GP, booking a fine needle aspiration, going back to the GP only to receive inconclusive result... and finally booking into a private hospital to get the node removed as soon as possible... all the way through we had to push doctors for appointments and deal with rude receptionists... it was such a battle! But I think it was really worth being a 'hard-ass' (even though I am normally the person who doesn't argue).
Once the Lymphoma was diagnosed on the 31st of July she had a bunch of tests including a PET scan and the results we got back showed that there were traces of cancer around where the lymphnode was removed, but otherwise everything else was clear - and because she had no symptoms other than fatigue, that's when they told us it was stage 1. The haematologist was quite confident that 3 rounds of 3 weeks R-CHOP would be enough - he told us that in his opinion that any more chemo would not give any benefit - but of course that was his opinion about Belle's situation, although your husbands situation sounds similar there may be other reasons why your doctor said 5 or 6 rounds - maybe age or symptoms? Or just that German doctors like to be very thorough ;) but certainly worth asking him/her.
Next step is tests and a PET scan again to make sure that there is nothing still there, or anywhere else, and then a radiotherapy course just be extra sure that there is nothing left behind that does not show on a scan. Originally he was talking about a month of Radiotherapy, now recently he mentioned 2 weeks of Radiotherapy.
When will your husband finish his chemo - must be soon, even if 6 rounds. I can imagine he must be looking forward to it, Belle said 3 rounds was tough enough and her biggest fear is that they will still find traces of cancer and that she will have to do more rounds - she has nightmares about it. Has the Oncologist talked about doing radiotherapy? And after that... just check-ups? or will your husband need to take some medication? It seems you and I, and your husband and my wife, are in very similar circumstances at the same point in time.
Pass on my wishes and congratualtions to him as he will be finished too soon.
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