Just Going for my second R Chop chemo this week.

Hi John,

Sorry for the late reply I have had a few rough days.  Glad to hear you are enjoying life.  

I am told I am having 6 rounds of R chop not sure if it was the same for you but when I have the chemo as they have to administer the other drugs slowly as the mass is large I sit with a drip in my arm for around 7 hours and the following few days I feel wiped out.  

I have Kindly been given help and advise from both Trooper Phil and Highlander Mike, which is so nice to receive and obviously for people to take the time to make contact even though they are now well (been there, done that and proudly wearing the T Shirt) :-)

It is a rollercoaster and as I know and been told it's keeping your head positive which is a battle at times.

Take care

Verity

Hi Phil,

So sorry for the late reply just had a rough few days.  

Thank you so much for all the information and taking the time to write it is appreciated.  

I am going to take a leaf out of your book and do more exercise which to be honest my energy level has been knocked for six, but I am going to make myself do more, my son actually got my exercise machine out of the loft so now it is looking at me in my study so no excuse.

We have a chocolate Labrador who is now 10 and beautiful we live by the sea so we went to the beach often, but it is all steep hills where we live so I haven't been recently (not an excuse) the mass presses on the back of my major organs which makes breathing a bit laboured.  Anyway I am sure as the mass shrinks I will splashing about again, well unto my knees anyway, whilst our lab swims with the seals which is lovely to watch, she loves them and been around them since she was a puppy.  Enjoy your fur baby they are just lovely creatures.

Best

verity

Hi Verity

Don't push the excersise if it causes you difficulty, only do what you can do comfortably! I had 6 x RChop plus two sessions of Methotrexate which required a week in hospital each time. The reason being its very toxic and once administered you are on a drip 24/7 to wash it out of your system. 

They wont release you until it drops below ..0.1% or something! One of my five main neoplasmns sites (where the lymphoma decides to party and grow) was on my spine and if it crosses into your spinal fluid, the grim reaper smiles and rubs his hands for glee! Methotrexate is a precautionary measure to stop this happening. Most drugs will not pass the blood/brain barrier but Methotrexate does. So it mops up any rouge DLBC cells that may cross into your cerebrospinal fluid!! 

But I digress...lol! Great book to get hold of is: The Chemotherapy Survival guide. I found it a fantastic resource for reference. That said, I'm obsessed with knowledge .. especially when it involves my life!!

I know some people dont want to know ANYTHING!! I find that odd, I wanted to be a Phd on DLBC non Hogkins Lymphoma. And I studied like a mad professor. 

Heres a thing most doctors and consultants, dont have the time to look into the latest research. I dont mean that as a criticism, they have a very set way of 'doing business' and stick to it.

Another doctor told me that RCHOP melted cancer cells away like salt on ice!! I had a lump growi g on my rib cage that started to 'melt away' within two weeks of starting chemo! I thought I was imagining it at first...but it was gone very quickly!!

Thats how effective RCHOP is, one danger is, its so efficient that the destroyed cancer cells which are toxic can overload the liver...hence they monitor this during treatment.  ..And hence why drinking half a swimming pool helps ...lol

..Anyways, chin up, keep smiling, stay positive and remember....you JUST have a temporary illness, that is being treated with the best medication money can buy! 

Hello Verity,

I have read your posts & the reply’s you’ve received - I thought I’d drop you a few lines. 

Im sure what I’m about to write will not be well received by some. 
I will give you realistic not negative advice. 

I started my R-Chop Chemo Jan 2021  through to May 2021. I was under the care of a most brilliant McMillan unit & The Christie Manchester. 

I was one of these patients that had severe side effects from the Chemo right from my first session. You name I had it. 

Sepsis, E-Coli, Cellulitis, Multiple Blood transfusions, Pherifial neuropathy, Auntomonic neuropathy, Blown veins, mucositis Bowel & Bladder problems, Total hair loss & more . . so 
it’s totally understandable & normal ! to feel frightened & scared which I was. To say don’t be, but be fascinated ?? by this illness is a very tall order & unrealistic in my view. 
No one can say how you will feel physically or emotionally - But remember - you do what feels right for you. When I was going through the Chemo I felt so desperately ill & was reduced to being in bed most of the time as I was so weak & breathless as my Haemoglobin levels were ridiculously low . I would come onto this site & read about staying positive & how important daily exercise is, who go for mile walks, swimming, push ups/pull ups whatever - not everyone is that lucky or able to keep active !!! Reading all this had a truly negative effect on me - it made me feel as if I wasn’t fighting enough, staying positive enough etc. I spoke with one of the Nurse Practitioners at the McMillan unit. She was amazed - she gave me sound advice Listen to your Body - it will guide you totally. 
I was not able to go from my bed to an en-suite without my partner holing me up or a Zimmer frame. Forget exercise. 

I was also surprised at the total lack of empathy for a guy that wasn’t full of the Joys of Spring while talking with a Nurse at Bart’s. So the guy from this group decided to get up a find a new seat with a lovely view - very understanding & supportive. Maybe he was frightened, scared. Perhaps he was alone & didn’t have anymore to talk with & discuss his anxieties. Or maybe he was just having a shite day ! 
 Saying all this - I reiterate I’m not being negative - just realistic, I have developed a greater understanding of peoples fears & anxieties & I’m far more tolerant.

There is No doubt R-Chop is made up of amazing drugs & it does what you need it to do - kills of the cancer. It is also incredibly toxic & can be brutal on your system. 

As for me me now, I’m eight months since my last Chemo session. I received fantastic care, treatment & support. I remained as positive as I could, taking everything into account and I’m grateful to say I’m doing really well. I’m still on 3monthly checks & I’ve been told they will keep me on those for a while yet as I was so ill. I have been left with some ongoing problems some of which may be permanent.

Please listen to your Body Verity. Do what feels right for you ! If you want to cry, do so  it’s allowed & ok. 

I had mid length naturally blonde hair, a year on I have dark hair in a pixi style - it’s so easy it’s great. The recovery takes longer than you think it will - but you do get there! I promise. 

Sending you my best wishes, enjoy being by the sea with your FurBaby.

Listen to your Body & be kind to yourself .

Buttons 

Sorry should read “Peripheral” neuropathy 

Sorry it should read - “Peripheral” Neuropathy 

Good clear and detailed post Buttons.

Indeed everyone will approach and deal with their treatment journey differently depending on how the treatment effects us.

Listen to your Body & be kind to yourself is fantastic advice for us all, not only during treatment but post treatment.

I am so pleased to read you are doing really well ((hugs))

Over the past three and a half years particularly during my treatment I shared my experience in great detail, everything I went through and how I felt in depth. I was quite amazed at how my ramblings, often liberally dotted with dark humour helped and comforted people gave them hope and confidence. I had numerous responses...enough to fill a  book! 

As I said at the beginning, you clearly had a rough ride and had I have read  your account before my own chemo had started I might well have been frightened and scared. But here's a thing, fear activates our sympathetic nervous system (which is part of the immune system BTW) and triggers the flight and fight response. This throw back to prehistoric times was designed to keep us alive and once triggered it takes priority over everything period!

That makes perfect sense, I mean who would be worried about being tired or thirsty of hungry or ANYTHING else if a sabre toothed tiger was about to attack us!! 

Oh and you are quite right its totally understandable and normal being scared and frightened. As someone who spent twelve years serving my country six in Special Forces, I know that only too well. I faced death several times and have been in terrifying situations. But you CAN control FEAR, because at one extreme its called PANIC! A totally useless emotion that will get you killed...or shut down the mental and physical systems that could keep you alive. 

Best of luck with your recovery and thank you for for being realistic and not negative! ;-)

I'll stick to being unrealistic...and fascinated of course!! x 

Not everyone has the capability to react to being diagnosed with Cancer & its treatments as yourself. I totally understand the power of positive & negative thoughts. Some can find it hard to follow the science when desperately ill. Yet, you say you need to do this regardless of how ill you are ? 

Real life isn’t always so black & white & we all react, behave differently. Surely there is still room for empathy, understanding, lending a friendly ear when maybe someone would like to talk, not get up & move to another chair, because that person was actually being open about how he felt, but you didn’t want to hear it. 

I will continue my journey in my own way. I will stay in touch with the Clinical Team who have become friends & other patients.
We meet up have a coffee, lots of laughs but most of all offer support & understanding to each other respecting each other as individuals who deal with things differently. 

I wish you a positive journey, with good health at the finish line. ATB

Buttons. 

Hello Mike,

I hope you are doing well . We are all individuals & must respect that. 
I’m doing great, thank you.
A very rough journey but I got there
Sending hugs back to you 

Take care 

Buttons.