49yo - Just diagnosed with Stage 3 DLBCL

One or two wines or beers is fine end of week 2 / week 3 from my experience (and from what the nurses told me) - but no spirits! 

I'll have a couple this weekend, but only a couple 

Hi Sarah,

Glad to hear it’s going well.

In my experience the nurses say yes but the Consultant says no.  I guess it’s their job to toe the official line though.

I have treated myself to 2 glasses of wine on the 3rd Saturday of each cycle. As the cycles have gone on my taste buds have diminished and it’s not quite the same experience as having a drink pre chemo life and I actually don’t crave anymore than the couple that I have. I used to drink on Fridays and Saturdays and could easily drink gin and wine and not really suffer a hangover, however after the first 3rd Saturday I did wake up feeling a bit rough after just the 2 drinks. 

I think the reason why they don’t suggest it’s a great idea is because of the additional strain on your liver and your kidneys which are already trying to process all the toxins from the chemo.

Personally I don’t want to do anything which might delay the next treatment as I just want to, hopefully, get off this ride as soon as possible. 

However they will check your liver and kidney function as part of your blood test before each round so they can advise if anything is going awry and you can perhaps adjust your lifestyle accordingly. 

Take care.

Thanks so much for the advice, it really is appreciated. I’ve decided to have a couple of glasses of wine tonight….no more though. Everything in moderation as the saying goes!

Have a lovely weekend.

Take care x

Hi all,

Just an update as had Cycle 3 yesterday.

I think this was the worst I've felt - akin to being smashed in the head with a slice of lemon, wrapped round a gold brick (Google Zaphod Beeblebrox's Pan-Galactic Gargle Blaster for the uninitiated to the genius of Douglas Adams)

However this morning it just feels like the usual hangover.

So far (fingers crossed) - I've not had any stomach/bowel issues, and during Cycle 2, just had a few dizzy spells (which aligned to me having low blood pressure at the time... I measure it myself each day), cured, I think, by pre-emptively taking the anti-nausea tablets.

I've definitely been able to work more during Cycle 2 than 1, but I am limiting myself as I have noticed a correlation between working too much and getting severe headaches (perhaps because I sit in front of 3 screens when I'm working)

This time at the hospital, I took the wonderful nurses cup-cakes and a fruit basket. Needless to say, they were very pleased and told me I didn't need to - but as I pointed out, they are saving my life, and a few treats is the least I can do!

It also transpires that the Chemo Day Unit at Broomfield, Chelmsford has only been open 4 months, so I had a meet-and-greet with the Mayor of Chelmsford yesterday. So my slap head may be on a website near you soon

It was my 50th birthday 10 days ago, but celebrations were limited to a dozen people, very socially distanced, in my garden. It must be the first birthday in the last 35 years where I've been sober! I've also not told many people about my cancer, but despite this, when I added a Macmillan donation thingy on my Facebook profile, the family and friends that do know  about it donated over £700 which I thought was pretty generous and amazing as there were only 25 of them who donated. I'm lucky to have such people around me for sure.

Anyway - I hope everyone else's treatment is going well, and I look forward to actually being able to socialise properly.

Cheers,

Paul (DengieBloke)

Hi all,

Just an update as had Cycle 3 yesterday.

I think this was the worst I've felt - akin to being smashed in the head with a slice of lemon, wrapped round a gold brick (Google Zaphod Beeblebrox's Pan-Galactic Gargle Blaster for the uninitiated to the genius of Douglas Adams)

However this morning it just feels like the usual hangover.

So far (fingers crossed) - I've not had any stomach/bowel issues, and during Cycle 2, just had a few dizzy spells (which aligned to me having low blood pressure at the time... I measure it myself each day), cured, I think, by pre-emptively taking the anti-nausea tablets.

I've definitely been able to work more during Cycle 2 than 1, but I am limiting myself as I have noticed a correlation between working too much and getting severe headaches (perhaps because I sit in front of 3 screens when I'm working)

This time at the hospital, I took the wonderful nurses cup-cakes and a fruit basket. Needless to say, they were very pleased and told me I didn't need to - but as I pointed out, they are saving my life, and a few treats is the least I can do!

It also transpires that the Chemo Day Unit at Broomfield, Chelmsford has only been open 4 months, so I had a meet-and-greet with the Mayor of Chelmsford yesterday. So my slap head may be on a website near you soon 

It was my 50th birthday 10 days ago, but celebrations were limited to a dozen people, very socially distanced, in my garden. It must be the first birthday in the last 35 years where I've been sober! I've also not told many people about my cancer, but despite this, when I added a Macmillan donation thingy on my Facebook profile, the family and friends that do know  about it donated over £700 which I thought was pretty generous and amazing as there were only 25 of them who donated. I'm lucky to have such people around me for sure.

Anyway - I hope everyone else's treatment is going well, and I look forward to actually being able to socialise properly.

Cheers,

Paul (DengieBloke)

Hi Paul

Great to hear your update, I’m sorry cycle 3 has been tough, glad that you’re over the worse though.

I’m writing this whilst waiting at the hospital to see the consultant prior to cycle 2 tomorrow. 

I’ve been feeling really well and lumps have gone down, although feeling twinges in the jaw area which niggles me - going to mention it.

it must feel good to be half way through already. Will you be having a scan shortly? I’ve been told after cycle 3 I’ll be having a PET scan….I already feel anxious at the thought of it!! Must remember to take one day at a time.

Good to hear you’re still able to work, I’ve been doing the same, but it’s difficult to stick to knowing your limitations!

Keep updating, great to hear from you.

Take care,

Sarah 

Hi Sarah, 

Yes, I have a contrast CT in a couple of weeks already booked. 

I did hope to speak to the doctors yesterday about my PET scan I had at the end of June, but my consultant moved to another hospital and they said I need to phone and ask for a telephone appy... A bit annoying as they were literally one floor above the Chemo day unit...

Going back to how I feel.. As always... I see all this as just a problem to solve. I'm 1/2 way there now, so half way to cure. My main lump (which was the size of a naval orange!) is now essentiallyone! So take the same positive view with your lumps - it shows its doing the job well

Hi all,

Glad to hear things are going well for you both, or at least as well as these things can.

I had my final (hopefully) 6th cycle last week. No major changes in terms of side effects than those experienced before. Still working and just getting on with life as much as possible/sensible. 

My ability to handle this heatwave is perhaps the main bug bear at the moment.

I had a CT scan after Cycle 4 and they said things were looking like they should at that stage.  

I am waiting on my dates to for my inpatient methotrexate in August.  This is done as a precaution apparently because if it were to return and comes back in your central nervous system it’s harder to treat.  My lumber puncture didn’t show any signs of it being there so I’m not sure how it’s meant to treat it if it’s not there, or might appear there at some later stage but happy to go along with the treatment.

I’ll then have radiotherapy in September on the original main mass.

I was told I would then have a PET scan about 8 weeks after all treatment because the scan shows active cancer cells but it will also show dying cancer cells in the same way and therefore you can get an inconclusive result if done too soon after treatment and the cells are still dying.

As you know it’s the steroids which shrink the mass and the chemo hopefully kills the cancer.  I still get some back pain and worry that it’s not working but my earlier MRI, after cycle 2 specifically for my larger mass showed that it was, at that point at least. I did do quite a bit of hedge cutting at the weekend so I try to be rational and consider that things like that could be the cause of any subsequent aches and pains but I appreciate the mind often wants to jump to other conclusions when left to its own devices.

I hope all continues to go well for you both. If they mention methotrexate or radiotherapy to you as part of your treatment plans and you want any advice just give me a shout as I’m slightly further down the path.

Take care.

Hi guys

Just thought I’d check in as you’re in my thoughts and I hope things are going good.

I had my 2nd cycle on Friday and I’ve been surprisingly ok! I’m waiting to hit the wall…but so far so good.

Apart from constipation (sorry TMI) my jaw aches a lot. It’s were the lump was/is, feels like it’s going into my tonsil and sometimes shoots up into my ear. I mentioned it to my consultant last week and he didn’t seem too concerned and said it can be a normal reaction. It just worries me that the treatment isn’t working…even though the lump has reduced drastically.  I’m a born worrier!

I’ve got my 3rd cycle on Friday 13th Aug! Can’t believe I’m almost half way there…..I’m already getting anxious about the PET scan that I’ll have after the 3rd treatment….what if it’s not working?!? 

I’m rocking the wigs and not having to shave my legs is a blessing!! (Silver linings eh!)

Anyway, hope everyone is doing well, sending love and positivity.

Sarah x

Hi Sarah Sassy1234, sounds good to me and my wife and I always worked on if my team were happy we were delighted.

Based on my journey with my brick sized growth in my neck I had far more pain in the growth area and surrounding area during treatments than before I started treatment and that was bad.

My consultant said from day one that the pain most likely will be rather bad as the muscle and nerves that had been trapped in the mass would start to move and stretch and he was spot on ….. “It does what is says on the tin Mike” was his reply a few weeks in.