New to NHL, New to Forums!

myra64 · New User Joined: 20 Aug 2008 Posts: 3

I am a 44 year old mother of 3 teenage daughters recently diagnosed (Friday 13th June!) with DLBCL (mediastinal) Stage 2A. I am from the West Coast of Scotland but have lived in The Netherlands for the last 3 years so always wonder if treatment varies from what I would have received at home.

I presented with superior vena cava syndrome. Although probably had felt increasingly tired and unwell for a couple of months my symptoms of facial and neck swelling and darkened blue veins on chest and neck area increased dramatically over the 2 to 3 week period prior to diagnosos. I was also finding it increasingly difficult to sleep and needed extra pillows as found I could breathless when lying flat.

I have now had 5 of 8 chemotherapy treatments and am receiving R-CHOP 14 regime. It is hard going as every 2 weeks and the injection (Neulasta) for the white cell count seems to be the one of the drugs that gives me more side effects. CT scan after 3 chemos shows tumour has responded well to treatment and is much smaller. I stupidly didn't ask what size it is now- it was 9cm by 7cm at the beginning- how your mind goes blank when sitting in front of a doctor!

Radiotherapy is scheduled for after the chemo, repeat CT scan and a PET scan. Not sure how many sessions yet. I am now getting apprehensive in case tumour not all gone at end of chemo, though I have to say doctors have been very positive from the beginning.

I am new to forums and have it very helpfula and source of support over the past few weeks being able to read other stories. Hope I can make a helpful contribution!

Myra64

Diagnosis: Agressive DLBCNHL Stage 2 (subtype mediastinal)
Date of diagnosis: 13th June 2008
Treatment regime: R-CHOP 14, 8 treatments planned followed by radiotherapy

ChemoMan · Posted: Thu Aug 21, 2008 5:17 pm Post subject: Re: New to NHL, New to Forums!

Hi myra64

When it comes to NHL the golden rule is don't panic. Cure rates for DLBCL are very high these days, but you have probably been told that already. I wouldn't worry too much about the Dutch medical system either, as it is very good, easily comparable to the British system.
Before Rituxan there were a lot of prognostic indicators that told the Doctor's how well you were likely to do, but these days it really depends how your lymphoma reacts to the Chemo, especially the Rituxam. If it responds quickly then in all likelihood you will be OK after your treatment and you are looking at a cure 5 years down the track. From what you have written it appears your lymphoma is indeed responding well so it is looking very good Smile

Also 2A is good that's what I was staged at Smile

the other thing going for you is your age, the younger you are the greater chance you will survive, so all in all your chances are very good indeed.
As far as the Neulasta is concerned there is very little you can do about the nasty side effects apart from taking some paracetamol and if you experience any shoulder tip pain get yourself to your doctors quick. neulasta gave me a sore back which lasted over a month after my chemo had finished, but it kept me safe during the cold and flu season.

Hang in there Myra64 and don't panic as you will get through this and you will be in remission when it is over. The trick is to stay in remission ! And don't be fooled by the 'Aggressive" tag. DLBCL is called aggressive because if left untreated it will kill you in 12 months, but that is not going to happen to you Smile

I wish you all the best with the remainder of your treatment and Good Luck
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
http://cancerforums.net/viewtopic.php?t=9620

myra64 · New User Joined: 20 Aug 2008 Posts: 3

Thankyou for the supportive words. It is always good to have the positive reinforced at these times, especially as the chemo does get a bit harder with each treatment. I think it may be because you know what to expect, although it is still not as bad as I once would have thought. Number 6 next week so 3 quarters of the way through- normal life nearly in view! Thankyou again. Myra64

ChemoMan · Posted: Sat Aug 23, 2008 9:14 pm Post subject: Re: New to NHL, New to Forums!

Hello again Myra64

You are receiving a very heavy chemo regime . R CHOP 14 is very exhausting and 8 cycles is very heavy going indeed, I can't really imagine how bad you must feel. Do whatever it takes to make you feel better and Hang in there because at the end of it you will be in remission Wink

_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
http://cancerforums.net/viewtopic.php?t=9620

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