New diagnosis waiting treatment plan

Hi  and welcome to this corner of the Community but always sorry that folks need to find us.

You are in the system now so things should move quick enough but who knows during these times. From seeing my Oncologist to getting my mask made, all the planning and my first zap of Radiotherapy was about 25 days but my case was rather complicated and some research into how to treat it had to be done.

When I went to see my Haematologist I had to have another biopsy as the NHL was now in my neck so this took a good month before chemo started. It’s all about getting the best plan in place and not jumping in.

We do also have a dedicated Diffuse large B-cell lymphoma group where folks with this NHL hang out.

Well done putting some info in your profile, this does help and you don’t have to repeat yourself so much and of course you can hit the group members names and see their stories.

We are here to help answer your questions as best as we can.

((hugs))

Thank you for that perspective I am guilty of wanting something done right away seems to be the only thing my overwhelmed brain can agree makes sense, to treat it immediately that is. But I also know the oncologist I am going to see 1st is not likely the best person to manage my treatment as there are others in the area that are more familiar and have better access to relevant treatment modalities and trials if needed. So I am constantly trying to remind myself to be patient when it comes to treatment. Waiting for the best treatment within reason is probably the truly logical thing to do. 

Hi again.

Yes, it's hard to control the battle between the ears especially coming from a medical background. but from my 21 years on this journey you only worry about the things you have to worry about and until you have a clear plan you are basically in the dark.

Lymphoma is on the whole very treatable and it does pay to take some time to get everything correct before treatments start as you don't want to over treat you.

As I said, my case was rather complicated so I was told that they would not jump in with treatment but I had to 'suffer' until they got some other specialists opinions as to the best way forward.

As you know, Heamatology would be the first stop for Lymphoma but as I had to get my 'lump' on my forehead zapped I started in Oncology. The consultant and his team were great and did a great job - there was a 50/50 chance of tossing the sight in my right eye but no....and we moved on to the next part of my treatment.

Heamatology were also great and again put my case out for review.

Yes, taking time will not feel logical at this time. But in most NHL cases there is time to Lins everything up and rather different from your normal working environment.

For me it took a month from diagnosis to starting treatment and that month included the Christmas period.  I ended up in hospital a few days into the new year so my pre-chemo tests were accelerated and I was able to start treatment on 16 January.  

My initial appointment for review was 10 January so treatment would have been delayed by several weeks had I not been hospitalised.

As soon as I started pre-phase my symptoms started to improve, which gave me some cause for optimism before the start of actual chemo.

The time prior to starting chemo was a bit of a whirlwind.  So many tests arranged at very short notice.  It was exhausting as those tests determined whether or not chemo could proceed.

It has gotten easier to wait its a little weird to say I guess but as we get closer to having more answers the anticipation seems to lessen

Did you do intrathecal chemo to prevent spreading to your brain/cns?

Hi, it was around 24 or 25 days from having the initial test and being told I had lymphoma to finding out the type and starting treatment for dlbc, to help with the waiting and wondering I took this approach:

Anything I` could not change I would neither worry about or focus on, where I could make a difference then thats were I would channel my energy, then once treatment started I saw it as a contract, the medic team would do their best to rid me of the disease and make treatment as tolerable as possible and I would do all I could to stay as healthy as I could and follow the advice as best I could. I found it helped and reduced lots of stress and I had no anxiety, which is not always the case for some.

Methotrexate will be the treatment that may be given with rchop, I had 8 rounds of rchop 11 years ago now so take heart from that as many of us beat this disease and go on to be considered cured.

John   

, it is rather weird that the more you know the better you are at dealing with this and good to hear that you are you are winning the battle between your ears - well done.

My journey was rather different, so in some ways, for years and years we were looking at the next treatment so got used to it I think.

Never required Intrathecal treatment but I am sure others can help out with that one ((hugs))

I had two lots of intrathecal methotrexate out of a planned four.  I had a severe reaction after the second so that part of the treatment plan was discontinued.

I've just completed my first round of high dose methotrexate and will have the second in a couple of weeks.