Hello,
This is my first visit to the NHL group. After months of tests, scans & biopsies I was finally diagnosed with Stage 3 DLBCL on the 7th January. I had my first round of R-CHOP on the 14th. That went to plan & the following day I was fine.
Yesterday & today a different story. No energy, feel weak & wobbly and very tearful. I thought initially the treatment wasn’t supposed to cause any real problems ? but possibly harder to deal with as it progressed. I must admit I feel very worried, I have felt so bad over the last two days.
I’ve another 5 sessions over an 18 week period.
Just wondering if anyone has any info or advice.
Many Thanks.
Hi Buttons2020 and welcome to this corner of the Mac Community.
These early days of the treatment journey will be full of twists and turns, questions and indeed ‘what if’s’
The main thing to keep in your thoughts is the further you get through treatment the more your cancer is being killed off.... this may come with some challenges but the important thought is the chemo is doing it’s job.
Yes lots of people don’t have ‘real’ problems but there may well be accumulating side effects as you go through.
I had a different type of NHL (see my profile) and a cousin of R-CHOP being R-EPOCH and on the whole I did ok.
During this first cycle your are ‘learning’ to live with the treatment and your body is acclimatisation to the cleaver treatment..... a Pharmacist friend called the chemo “our clever bleach” but she said that it is amazing g stuff and does the job very effectively.
You may find the next cycle less challenging in some respects as you have some understanding and some of the issues won’t come as a surprise.
One thing I did over my 21 years journey was keep a diary every day, this helped track progress, keep notes of issues and trends and was very useful when clinic times came round as you could note down my questions so I could ask my team..... it gave me some control.
Remember if at any time you are very concerned you call your team, do you have the contact details for a Cancer Nurse Specialist?..... they are your new best friend.
The treatment information we all get given can be challenging as the side effects can all sound daunting...... but people don’t have every side effects and when these do come along everyone experiences various levels and not all bad.
These are some useful links for you to have a look at:
Nausea, remember not to suffer in silence when it comes to nausea there are lots of tools available - but your team need to know how you are getting on.
Fatigue may well build up over time so take each day as it comes but at the same time keep some activity going as this does actually help overcome some of the fatigue.
During my 6 cycles of R-EPOCH I was on my chemo for 120 hrs 24/7 at a time and the main issue I had was fatigue but my nurse team told me to keep active so I walked the ward corridors with my chemo stand after every meal and actually did a few miles a day and this did help a lot.
Avoiding Infections obviously is very important but you will totally get this during these challenging times.
I would also highlight the importance of drinking lots of water as this will flush out all the toxins released by the chemo and protects your kidneys.
Keep your questions coming as this helps you and let’s us help you as well.
Good morning Buttons2020, I do hope you are feeling better.
Yes my story is ‘epic’ as a group member once told to me, but I see everyone’s cancer journey as being epic so you are doing amazing and you will do this.
We all have to do what is required to beat the beast and come out the other end of this dark tunnel and once all the dust settles we will be more appreciative of life and most likely live it looking through different eyes.
When us your next treatment?
Hi again Buttons2020, sorry to hear you have been rough, make sure you are drinking lots as this will help keep you kidneys as I found when I did not drink I did have some back (kidney) pain.
Good that your Nurse Practitioner was able to reassure you, rest up and tack each day as it comes.
Hi Buttons
I hope you are feeling better, it is difficult to get your head around things, I feel for you. Sometimes
we need to give ourselves a little time and rest. If you are tired have a snoozzle. Prednisolone can affect your mood and sleep, thus the 1:27 am reply from me!
I found it reassuring to take temperature if I had any symptoms I was worried about. I do get sire throats gargling or rinsing with no alcohol based moth wash can help, along with fluids galore!
The first session is s long day, it gets quicker the next time and easier!
Sending you best wishes.
Irene
