5th Chemo and experience so far ……

Hi, my name is Debbie and I was Diagnosed with Diffuse Large B Cell Lymphoma in January 2022.   Starting R-CHOP shortly for 18 weeks across 6 cycles.  I live in Kent and am 55 years young. I enjoy walking in the countryside with my dog and travelling worldwide (prior to Covid 19). Had my first R-CHOP Treatment 1st Feb 2022 and managed a normal day and walked our dog.  Lost all my hair 3 weeks into treatment. They do prepare you but it’s still a shock but I’ve just told myself that nothing is permanent and it will grow back.  Second chemo March 22 at reduced dose as white blood cells were at the low end and bilirubin was high. I have noticed a rapid heart beat and have become more breathless. Stairs feel like a mountain but I’m still continuing to eat well, walking my dog daily, and doing most household chores. The good news is that the tumour is shrinking and the chemotherapy has reduced the inflammatory markers significantly as I now have very little pain and no longer need to take Morphine.  Before 3rd session bloods showed I was anemic so had a blood transfusion. The dizziness I was experiencing stopped, ringing in ears stopped and rapid heart beat reduced. Have still continued with chores and walking the dog and latest PET Scan shows there has been a significant reduction in cancer cells, which I’m so grateful for. 4th session is 6th April and next 5th Chemo 27th April. 5th Chemo done all ok apart from ringing and whoosing in my ears. Tumour has shrunk amazingly well and is now barely noticible on the leg compared to what it was. I remain active but have had a passion for pizza and garlic bread and can’t get enough of it. I shall have to take control and walk further tomorrow to burn off the calories. I have a feeling the Pregablin that I’m taking for back pain (due to have MRI) is the colperate!  I have been told that I will need to go into hospital for 3 - 5 days for a special drug that breaks the blood/brain barrier and goes throughout the nervous system as the lymphoma had spread to left kidney but thankfully the R-CHOP has given it the Chop. I was so scared about what to expect regarding treatment, it’s the fear of the unknown, but the care and kindness so far received has been excemplary and I also need to thank The Highlander (Mike) because without his words of wisdom and support at the beginning of this journey I would have struggled, so thank you so much.  Last Chemo in 2 weeks time - I’ll be ringing that bell !  

  • Hi again , oh the up’s and down of the treatment journey but your are doing great. Keeping active and as normal a routine as possible makes such a difference.

    I never required the treatment for the nervous system but it’s all a step in the right direction.

    ((hugs))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Hi Mike, thank you for all your support. You are amazing. 

  • Hi Debbie and Mike.  I was diagnosed with Diffuse large B Cell Lymphoma in March and had my first R CHOP 3 weeks ago.  My second session is tomorrow.  What first alerted me to the problem was a lump in my armpit which I first noticed around Christmas time.  it grew and grew and felt the size of a tennis ball by the time I started chemo.  i couldn't raise my arm above my head as it really hurt.  A PET scan showed some smaller lymphomas around my body and I was diagnosed as Stage 4. 

    After just one session of chemo the difference is amazing and my armpit lump has shrunk incredibly.  I tolerated the first lot of R CHOP extremely well but have read that the side effects worsen with each session.  This worries me as my main concern is nausea, particularly as I have a fear of vomiting.  I have had no nausea for the whole 3 weeks and can only hope that I can get through all the rounds of chemo in the same way as the first.

    Debbie to read that you have managed to carry on pretty much as normal through your chemo even though you have other health problems as well as really boosted me.  Thank you so much for taking the time to post.

    I haven't posted previously because I was worried that someone would come along and tell me  some disastrous tale of their experience that would get me worrying again.  I know it is a rollercoaster with ups and downs and I have had some very 'tired' days but overall so far so good.  I also walk every day and plan to keep that up.  I have also carried on as normal with household chores as much as possible, just hope this continues.

    Thanks again Debbie and Mike you really do inspire me ((hugs)) xx

  • Good to hear your treatment is progressing well, I'm always interested to hear how other people on this journey are managing their chemo sessions. I've got my first R-CHOP session on Monday 9th, just a weekend away, and I'm obviously stressing about it. Fear of the unknown, really, but this time next week I'll be well into my first session. 

    Your experience is really helpful, thanks for sharing it. :-)

  • R-Chop is pretty well tolerated. The steroids help with nausea and so do the anti sickness pills. I have had no vomiting but have had some tired days. Keep up the walking it helps distribute the chemo drugs around the body. Also makes you feel better even when you don’t want to do it - do it. Drink 2 litres of water per day to help flush the toxins out. Side effects do get mildly worse as you progress but nothing you can’t tolerate. I’m so glad the tumour has shrunk. R-Chop does it’s job with lymphoma very well. Keep strong and know that the sessions of Chemo will fly by. I’m so glad my post helped you. Xx 

  • I was stressing about it but when I got there and went through the first session I thought to myself what was i worrying about. You will be absolutely fine just tired. R-chop is pretty well tolerated and does it’s job. Try to drink 2 litres of water a day as it flushes out the toxins and aim to walk even if you don’t feel like it 40 mins per day as it distributes the drugs around the body. Please let us know how you get on. Good luck with it all. Stay positive xx 

  • Hi  and welcome to this corner of the community.

    I am glad that you are finding the community helpful and as you will see….. on the whole things tend not to be as bad as what you read in the books and prep your mind for. You can hit my community name to see my story….. but I had a big brother to R-CHOP (R-EPOCH) and each of the 6 cycles being full on with mr in hospital 6 days/5 nights on my IV 24/7 for over 220hrs each cycle and honestly the main problem was developing Fatigue but keeping as normal a rhythm going. I had Nausea but was never sick during my main chemo as this was down to using my meds well and often changing them as time went on.

    Take each day as it comes and don’t wait around for the worst to happen as it often never happens ((hugs))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Hi Conundrum1956.  I know what you mean.  I was so stressed before my first session (about the nausea etc) that my consultant offered to arrange for me to stay the night in hospital after chemo if I needed to so that I knew every possible drug would be available immediately.  I didn't intend doing that but thought it was a really kind and caring offer.  As I said my first round went really well.  It is a fear of the unknown.

    I started to lose my hair 2 weeks and a day after my first session.  It was coming out in handfuls so I had my head shaved on Tuesday.  Thankfully the loss of hair was something that I could get my head around (excuse the pun) and so far hasn't really stressed me out at all.  I have got a wig appointment for next Friday and am rocking the bandana/turban look at the moment :-)

    I am sure you will be fine.  Please do come back and let us know how you get on.

  • I do intend to keep up with the walking.  We have dogs and so they have to be taken out every day and although my husband could go alone I don't intend to let him.  There have been a few times when it would have been easy to not go, when I have felt tired, but have always felt better after the walk and fresh air.   I have always liked water to drink as opposed to fizzy drinks etc. and have made sure that I drink at least 2 litres a day.  You are right it really is necessary and I am sure it helps to flush everything out xx