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Sparkle Lolie 01-12-2020 12:56 PM

DLBCL treatment
I'm due to start R-CHOP this week after a recent diagnosis of DLBCL and I'm interested in the experiences of others with this treatment.

I'm currently on pre-phase and am finding myself very jittery from the prednisone. It's a side effect I expected, but I'd like to some way to manage it in future if possible as I'll be taking it for 5 days each treatment cycle.

My understanding is that lymphoma is treatable at every stage and that there are several other lines of treatment available if R-CHOP fails, but that R-CHOP is very effective for those who can tolerate the treatment. I'm scheduled for 6 cycles, with each cycle starting 14 days after the last. Apparently it can be slowed down to every 21 days if I need extra recovery time.

On a more personal level, I hate the whole "brave warrior" thing surrounding cancer and that leaves me a bit at odds with a common theme within the cancer community and struggling to find a comfortable philosophy towards this.

PBLz 01-12-2020 03:09 PM

Re: DLBCL treatment

I have just replied to you on the other thread, so will not repeat the general tips on preparing for your first day of chemotherapy here.

Regarding your issue with prednisone, I am not sure there is any way to manage the jitters it causes. I must say I did get a lot of the stuff - especially in the months prior to diagnosis - and did not particularly feel that it was causing any strong side effects… But then, I was also on opium powder and other painkillers and not entirely myself essentially due to the side effects of those. Maybe your medical team could help you with that - or, you may want to try yoga and meditation, which can help you get through the emotional roller-coaster of diagnosis and treatment, even if it cannot really counter the prednisone itself.

On the "brave warrior" / "survivor" note, not everybody feels that way - I know I don't. To a colleague who recently told me how brave I was, I replied "Well, it's not as if I had much of a choice". Truth of the matter is, we're just doing what we can to live a little longer, with the help of hematologists and their pharmacopeia ;).

I hope all goes well for you on that first day. Do not hesitate to inform your medical team of any development, new symptom, etc.

Do keep us posted.

Sparkle Lolie 01-13-2020 01:42 AM

Re: DLBCL treatment
Thank you for the information.

I started allopurinol prophylaxis today and I have the Cancer Council sending me out relaxation and meditation CDs, while the Lymphoma Association is sending me out a treatment diary.

I've already been warned that the first rituximab infusion will take all day. I bought some loose, comfy clothes just for my treatment days and my daughter has bought me an audio book subscription to help pass the time if I don't feel up to concentrating.

I will find out tomorrow about venous access. I'm going to ask for a port rather than a line.

johnr11 01-13-2020 06:48 AM

Re: DLBCL treatment
Hi, if they don't give you a port then its done via a cannula and they normally start in the hand and work up the arm, if you go down this route ensure they alternate between left and right hand/forearm to give them a chance to recover and to not cause to many issues in the future with your veins.
RCHOP14 does not give the body as long to recover as rchop21 so you may find the steroid hit causes some sleepless nights, the good thing is treatment is done quicker and research has shown the is no difference in outcomes.
The other thing to try along keeping hydrated is daily exercise in the form of walking on days when you can, short circular walks are fine and it helps in many ways.
If fatigue becomes a challenge let them know, or tingling in your fingers or toes becomes and issue then tell your doctor or nurses straight away.
Hope it goes well and be assured its never as bad as we all fear before treatment starts, I remember sailing though the first on and the 3 weeks after apart from that reaction to R.


Sparkle Lolie 01-13-2020 07:18 PM

Re: DLBCL treatment
Met with my consultant this morning and the news is about as good as it gets.

There's no distant spread and the anticipated treatment goal is cure.

There are no outpatient chem spots available this week so I will be admitted tomorrow afternoon and have my first cycle of chemo as an inpatient.

I will need three more lumbar punctures during treatment but no bone marrow biopsies are anticipated (yay).

My consultant told me that my rapid and dramatic response to prednisone is predictive of how well they expect I will respond to R-CHOP overall, so I'm feeling both relieved and encouraged at the moment.

I was so blindsided by all of the good news that I forgot to ask them about venous access, but I can do that tomorrow when I'm admitted.

johnr11 01-14-2020 12:03 AM

Re: DLBCL treatment
Hope all goes well with the treatment and being an inpatient should not make a big difference, whilst rituximab is given you will have regular checks, blood pressure, temp and sats and if your fine with R around every hour they will increase the rate it given.

Let us know how it goes


Sparkle Lolie 01-16-2020 01:10 AM

Re: DLBCL treatment
An outpatient spot became available so I ended up having my first lot of infusions today as an outpatient. I didn't react to the rituxamib so future infusions should be faster.

I need a subcut injection of G-CSF day 4 but they've sent me home with a $2000 dose of that as two of my children plus my next door neighbour are RNs so I have someone medical available to administer it.

The experience was much less stressful than I expected, to be honest, not least of all because the nurse used the scanner to locate a suitable vein straight away instead of digging around.

johnr11 01-16-2020 09:07 AM

Re: DLBCL treatment
That all sounds very positive and congrats on being in the 50% that tolerate rituximab, remember plenty of fluids and walking

Sparkle Lolie 01-17-2020 06:28 PM

Re: DLBCL treatment
Still feeling fine after the first lot of infusions, and still wanting to eat anything that's not tied down (currently on day 8/10 of steroids).

I have my first pegfilgrastim shot tomorrow and I'm a little apprehensive about that.

Not as apprehensive as my son is though. He's an RN and will be giving me the injection. It's worth $2,000 a dose, so it's a big deal if it's not administered properly (which is why I don't want to do it myself).

johnr11 01-18-2020 12:23 AM

Re: DLBCL treatment
The injection is nothing I had to have them from cycle 4 onwards, if I remember they have to be taken out of the fridge before hand to warm a little, about an hour, but check.
Watch for the steroid drop as treatment progresses as withdrawing after 10 days without tapering may become an issue, if it does discuss it with your team.

Good to have a thread on here that covers treatment, do share as much as you can or are happy to, so others can read it.


Sparkle Lolie 01-18-2020 01:39 AM

Re: DLBCL treatment
Watch for the steroid drop as treatment progresses as withdrawing after 10 days without tapering may become an issue, if it does discuss it with your team.[/QUOTE]

I'm going to ring my consultant about it on Monday as the dose was increased from 75mg per day to 100mg per day on Day 6. That's a big sudden step off to nothing.

My first infusion-related side effect has arrived. I'm having a slight reaction to the doxorubicin. My palms and the soles of my feet have gone a bit red and the soles of my feet are a bit tingly.

My temp went up to 37.4C for a little while (I have to go to the ED if it hits 38C), but it's settled back to 36.9C. I've packed a bag just in case I need to call an ambulance later on tonight.

And yeah, I'm trying to post info which will be relevant to others who may be looking at R-CHOP.

johnr11 01-18-2020 03:25 AM

Re: DLBCL treatment
The tingly feet could be the vincristine, I ended up with peripheral neuropathy and this drug was stopped after 5 rounds, the consultant wanted to stop after 4, but I said I would have another dose than stop.

Some people do find they get small temperature spikes and they then subside and are manageable, are you keeping a daily diary so you start to get a feel for treatment and will know what to expect with future rounds.

Sparkle Lolie 01-18-2020 04:10 AM

Re: DLBCL treatment
[QUOTE=johnr11;5500145]are you keeping a daily diary so you start to get a feel for treatment and will know what to expect with future rounds.[/QUOTE]

I am. I'm recording everything, not just so I know what to expect but so that if I need medical attention I'll have an accurate record of exactly what's happened each day. It's easy to forget seemingly unimportant stuff if I don't write it down.

20 January update

Had my Ristempa injection yesterday without incident, took the last of this cycle's Prednisone today, and took the first two Respirim Forte, so I have now taken each of the drugs which will be included in each cycle.

I see my consultant again at the end of this week.

Sparkle Lolie 01-28-2020 11:11 PM

Re: DLBCL treatment
Today marks day 14 of my first R-CHOP cycle. Tomorrow, I start cycle 2.

Despite things going relatively well, with only some minor, intermittent neuropathy in my fingertips and some brief episodes of bone pain, I'm feeling just as apprehensive about cycle 2 as I felt about this one.

I don't want to spend the days leading up to the start of each cycle feeling increasingly anxious, but I'm not sure how to prevent it from happening.

PBLz 01-29-2020 06:56 AM

Re: DLBCL treatment
I'd say you seem to be doing fine. This is quite new to you and it is normal to be feeling a bit apprehensive, as chemotherapy is no picnic. Your first cycle went ok and so should your second, so the good news is, you should head back into your third treatment with confidence. If you do find then that you are still apprehensive, or if your apprehension makes you too uncomfortable, you may want to discuss it with your GP or hematologist - a few anxiety pills or psychotherapy sessions might be warranted to help you get over that. Do not try to ignore any of the signals your body is giving you - even when things go smoothly and the outlook is good, the whole process of diagnosis and treatment is trauma, and it can hit you any time.
I hope this helps.

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