49yo - Just diagnosed with Stage 3 DLBCL

Thanks for the feedback, glad it's all going well for you.

I think R-CHOP has become an all-covering treatment, with the CHO of the CHOP varying between patients. 

Mine is:-

R --> Rituximab (900mg)

CHO -> Doxorubicin [Red Devil] (100mg),  Vincristine (2mg), Cyclophosphamide (1780mg) 

P -> Prednisolone (100mg day for 5 days)

As for food..... I always take a cool-bag with nice sandwiches, snacks and drinks, plus a basket of fruit for the staff who always make me lots of cups of tea :-) 

Hi,

Yes my 6 RCHOPs were the same drugs.

The methotrexate is an additional form of chemo if apparently you are classed as Stage 3 or 4 or have masses close to spine or head etc.  There are also other reasons you might have it but I can’t remember those. As the methotrexate can penetrate the blood/brain barrier and thus can supposedly help prevent cancer in your central nervous system.  I have been recommended to have it because I had a mass close to my spine.

Hopefully you won’t fall into one of the suggested categories and can forego this particular treatment.

When they sped up my RCHOPs after the first one I never bothered with food (mine nor the hospitals) as a day patient as I was typically out just after lunchtime each time anyway. 

However being an inpatient this time meant sampling some of the hospital food although I did take fruit and some other snacks with me.  I know they have a limited budget and it’s not meant to be a hotel but it’s a shame they can’t offer better and also more healthy food.  The desert of the day on Tuesday was a jam doughnut!

Still I appreciate people are in hospital for a variety of reasons and people need cheering up.  

Good luck with the next cycle. Whilst they say side effects are cumulative in my experience some only lasted one cycle.  

Peripheral neuropathy is common so don’t worry too much about the tingling.  I have experienced it a bit in my feet.  The doctor said I perhaps didn’t experience it in my hands because as I’ve worked throughout my typing has probably helped keep my fingers active.

Enjoy walking those dogs!

"Minty Head"

Here's a funny one... My wife asked how I was feeling, and I said "Not too bad, other than the minty head" - and she looked at me as if I was mad.

I explained that a side-effect of the chemo makes the inside of my head feel like the inside of your mouth after sucking a polo mint... hence "Minty Head"

She thinks I'm nuts, and the only one feeling this.

Let me know if you get the same :-)

Lol…. never could have said ‘Minty Head’…… more like ‘ma heed is mince’

Afternoon folks

Just wanted to check in and see how you are?

Hope all is going to plan and you’re coping well.

I had my CT scan with contrast yesterday…..wow…that’s a weird experience!!! The feeling that contrast dye gives you is something else!! Lol.

Anyway, just had a call from my consultant. Results are ‘exactly what we would expect to see at this stage’. He said ‘partial response’. One of the nodes had shrunk from 27mm to 6mm.

I guess I should be happy but I can’t help but feel a bit low….I wanted the call to say ‘yay they’ve all gone and you’ve no longer got cancer’ maybe that’s unrealistic??

I’ve got my 4th cycle on Friday…..so on we plod.

Sending best wishes to you all x

Hiya,

I had cycle 5 yesterday (rough day, but much better today!) - I also got the results of my CT scan from last month, which shows an overall reduction of 70% across all lymphomas. I take it as good news as the last few bits have a lot more chemo drug attacking them. 

Today I'm mostly munching.... steroid-induced of course!

Apparently had a call from the DWP yesterday whilst I was at Chemo - so may have some good news on PIP when they call me back... but not holding my breath lol.

Hope it all goes well for you (and everyone else having treatment)

Cheers,

Paul

Hi all,

Sounds like you both have received really positive news.

Sarah, I’m sure if the Doctors had said at diagnosis that by half way through 3/4s would have gone you’d have been thrilled.  

I know though that it’s hard when you don’t feel ill and are living life almost like normal that you secretly think you’ll be a medical marvel and be that person who is cured quicker than expected, I’m sure we all think/hope that, but cancer remains a great leveller, there are very few shortcuts. 

Your positivity has got you this far, keep the faith, patience is key, you appear to be coping well though and the news is that the treatment is working.  That’s all we want at the end of the day.

All the best for the next round.

Sassy1234, this is very encouraging and a good foundation to get this done.

It’s important to remember that the effectiveness of these treatment are accumulative just like a course of antibiotics  so the full course is needed to get everything clear.

Sassy that is good going after 3 rounds so don't feel low, perhaps you could ask to see the pre treatment scan and the one you have just had, I found it really motivating to see them and see how much the disease had been knocked back.   Sounds like it gone from a large walnut to a small peanut, not bad when you visualise it. 

Thanks folks for the encouraging words, it really does help and makes me look at things more positively. I’ve been lucky (up to now) to tolerate the chemo fairly well, and have managed to continue with a pretty normal routine. I still can’t believe I’ve got cancer!!! Don’t think I’ll ever accept those words.

Paul, I’m hoping you get good news regarding your PIP claim, fingers crossed here for you.  Also, great news about your progress too.

Thanks Spring for your lovely words, really helps, so thank you!

Sending love and keep in touch, you’re all in my thoughts.

Sarah x