Hi

Hu Sarah Hi2345and a warm welcome across to this corner of the Community although I am sorry to see you joining us and to hear about your dad. I am Mike and I help out around our various Lymphoma groups. 

I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of T-Cell Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 when a second type of aggressive T-Cell NHL was then presenting so although my Lymphoma ‘type’ may be different I do appreciate the challenges of this journey rather well.

Unfortunately until all the results are back and looked at it could be one of the 60 types and sub-types of Lymphoma……. But you are safe in this group for the moment and as you get more information we can direct you to the best place to get specific like for like support.

Unlike solid tumour cancers (I see that you have been on your cancer journey) blood cancers like Lymohomas are completely different and unlike solid tumour cancers Lymphoma can turn up anywhere in the body and not be seen as secondary…….

But as the lymphoma is transported through the Lymphatic system, blood and bone marrow, it can go anywhere in the body……. but in the same breath this is how treatments like chemo is transported and this results in, on the whole being very treatable with good results.

Getting clear information is important and when it comes to Heamatology it can be confusing so you may want to have a look at these links as it will help you in your next appointments

Top tips for getting the best from your appointments

Questions to ask your medical team about Lymphoma

Any questions do ask them ((hugs))

Thankyou so much 

Any questions just ask ((hugs))

My dad got his diagnosis today he has diffuse b-cell lymphoma stage 3s not sure what that means . His calcium levels are 3.3 so had to be admitted but we had to go through the whole triage A & E again even though he had been sent as a medically accepted patient it took 7 hours and the service was inhumane left in a chair for hours with oxygen levels at 89. Mum kicked off and he is now in resus but we are confused and scared . I know cancer and hypercalcemia are a poor prognosis but all we have been told is he will start chemo monday/ tuesday they talked about pic lines or regular canulas . Me and dad were bombarded with side effect talks and info but struggled to process it all so quickly as they kept saying dad was in danger of heart attack and we need to get him to another hospital.  Today feels like a week my poor mum who thought her husband was just having a blood test wasnt even there for the discussion . I felt like I was drowning with information and couldnt process anymore . Then having to gove the bad news to mum who is 78 . Feeling like me and dad have been through a tornado & a bit scared and lost . 

Thanks for reading if you got this far x

Hi again Sarah Hi2345 sorry to hear that your dad had to go through the A&E system and had to long wait….. this unfortunately happen far to often.

The Staging in Lymphoma is rather different from sold tumour cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not. I was stage 4a back in 2013 and it made no difference to my outcomes.

Staging in Lymphomas identifies

1) Where the Lymphoma is presenting in the body (it can be anywhere)

2) What is the best treatment approach and best treatment type for your presentation

3) How long your treatment needs to be.

In your dad’s case the letter ‘S’ after his stage number indicates his lymphoma is in the spleen and thymus.

Please remember that as Lymphoma is a blood cancer…… it can basically turn up anywhere in the body but this remains very treatable.

A PICC line would make all his treatments and blood tests much similar….. it is very simple and quick to be put in and removers the need for changing cannulas every few days.

Sone of the treatments used are strong so a discussion will be ongoing as to the best treatment for your dad especially if there are great issues identified as they can reduce the strength if the treatments.

He most likely needs to be transferred for the reading but also to be in a specific Heamatology ward.

I do hope that today is less stressful and the plan going forward is getting clearer ((hugs))

Thankyou so much Mike you have explained things much more clearly . Yesterday was just a bomb shell to the brain. Dad is still in hospital hasnt made it to an actual ward yet he has been through rapid   majors  resus and back to majors during the night but at least has a bed. 

Dont suppose much will happen over the weekend but hoping he gets moved back to canterbury and start chemo on monday tuesday. 

Thank you again for your help and support . Sarah 

Oh I have had a few prolonged episodes of ‘Corridor’ care over the years ……. Yes the weekend is not a great time to be admitted but there should be an on call Heamatologist if required although I am assuming that he may have not seen a Heamatologist yet ((hugs))