I have low grade non Hodgkin lymphoma and was sent for a Ct and PEt scan to see if there is any other area in my body to do another biopsy as they could not get enough cells to decide the type or the would maybe do a bone marrow biopsy I saw the haematologist yesterday who said my results were back but the team need to review them good news no other site and she said nothing looked Amis on my bone marrow so she does not think there is any point putting me through a bone marrow biopsy just to get the type she is going to recommend a targeted treatment of radiotherapy has anyone else had this situation
Hi @Janie1234 and a big welcome to the forum. I’m glad you found us as this forum is such a supportive place.
I can imagine it’s been hard waiting for the results. I remember it well, as do a lot of us. Emotions all over the place and just getting your head around it is tough. How have you been doing?
I was diagnosed with NHL - follicular lymphoma - 5 years ago and had targeted radiotherapy in my parotid gland as that was the only area of concern. I had 12 daily sessions. I was then on put on watch and wait afterwards.
Can I ask where you are having the targeted radiotherapy?
Hi @Janie1234 your results sound positive to me, how do you feel about them and your treatment plan?
I think that the unknown is always scary for me.
Perhaps now is a good time to write down all your questions that you would like to ask at your next appointment, all your questions are valid.
I hope someone will be able to share their experiences.
Look after yourself and please keep posting.
Hi Nichola75 I am feeling ok now that there looks like a plan although the team do need to agree the consultant was quite positive she would recommend this for me. I have a lump in my chest area And it’s close to my lung hence the difficulty getting a big sample at the first biopsy thanks for Answering
Hi Erica I actually felt received yesterday as lots of things were going through my mind and I feel radiotherapy probably has the least horrible side effects
Hi @Janie1234
I was diagnosed with non hodgkins lymphoma on my lung jan 2020. This was found via a lung biopsy. I am on watch and wait at the moment. I havnt had a bone marrow biopsy as my doctor said it wouldnt change anything re my treatment. I am feeling quite well and since diagnosed i have made improvements to my health so i think i am now fitter with the blood cancer than when i didnt know. When are you due to start the radiotherapy?
Hi mandi713 not sure the team meeting is Jan 23 so she gave me a follow up for feb 28 but said they will contact sooner if they get a decision for me I may just get another referral straight to the radiotherapy team to discuss when the treatment starts she said
Welcome to the forum @Janie1234 . Although I guess we would all ideally prefer not to be here.
I was diagnosed five years ago next week with NHL. Radiotherapy was initially my treatment plan but ended up with nine rounds of rchop.
My sister did experience radiotherapy so I know a little about her experience. I know it’s important to rest it is very tiring not least because of the regular journey to and from the hospital. So do look after yourself. Keep us informed how you are doing. Thinking of you.
Yes, you’re right @Jules. The daily visits really take their toll, both physically and mentally. I continued to work through mine but in hindsight should have at least reduced my hours.
Yes exactly that.
I was initially diagnosed with follicular and told would have chemo then after biopsy and petct they thought it might be SLL. I had to wait for them to decide if more biopsies needed to identify 100%. Got the call this week they’ve decided not and just to start radiotherapy as 1st line treatment as that will work on both. They are saying i have " consistent with follicular ". Its low grade b cell but got a big abdominal mass that needs to shrink so organs aren’t involved. Ive got 3 smaller lesions i don’t think they are going to treat.
Am currently waiting on call from radiotherapy team for schedule.
Best wishes to you x
Hi @K2K. I know there are different side effects depending on the area being targeted. My follicular lymphoma wasnin the parotid glad. Are you working at the moment? If so please take care of yourself during radiotherapy and do what your body, and mind, needs X
Please do let us know how the call with the radiotherapy team goes and perhaps write down a list of questions/fears/practicalities etc. you want to ask.
I always get the call when I am in the middle of something.
I do like to know what my plan is, when and how it is taking place, side effects I might encounter and need to let them know about etc
Take lots of care.
Thanks @Nichola75
Im not working, retired early to be carer for my blind hubby.
Ive gotten him registered with the local Carer Support team and have flagged our situation to local Adult Services. We have good folk around us who will help and I’ve promised to ask
Got a big list of Qs for the r/t team lol
@Erica I’m sorry to whinge. In the great scheme of things got nothing to moan about, but all this waiting is driving me crazy!
I feel my life is on hold just waiting for a phone call.
Scared to miss it as they never give you a number to call back.
Can’t plan anything, don’t want the hassle of cancelling and letting other folk down. But at the same time my hubby needs to continue his activities for his own mental health so that puts me out of reach of a phone quite often ( can’t be putting dates in diary if I’m driving or write answers to my many Qs).
Just so frustrated.
OMG just had a call from haem cns. Apparently r/t referral wasn’t made the day my doc told me I should hear in 2 weeks, it was made a week later so now I have to wait another week before anyone will chase it.
Tbh there have been lots of times when one thing is said then it’s later contradicted. Perhaps I just take them all too literally but it’s starting to make me feel less confident in them.
Deep breath.
I’ll let you know how things progress
Oh @K2K I also hate that waiting on a call, it just makes me want to go to the loo and I daren’t because of waiting for that call.
Why do I watch the phone?
Do I have lunch or not?
Do I cancel other commitments?
Etc., etc.
Even having my laptop on my lap means jumping up to answer the phone is a logistical nightmare.
Waiting is a horrible feeling, but since my diagnosis I have just had to get used to it.
Very deep breath and take a chill pill.
Yes please let us know how you get out
