Hi, my name is Richard, and tomorrow I go for my first chemotherapy, the treatment I am having for my FNHL is that of R-CVP,and I was wandering if anybody had used this form of treatment, and what their experience was like
Hi Richard and welcome to the group, hopefully some people who have had rcvp will post soon, I had a stronger version called rchop for a different type of lymphoma but some of the drugs are similar. The CVP will be given quickly via a cannula in your hand the R is given via a drip. Some people have a reaction to R which is called rituximab, so if you feel itchy, get hives or a sore throat feeling let the nurses know, it is pot luck whether you do have a reaction or not. The first treatment can take a while depending on how the rituximab goes. You will get lots of tablets to bring home and I set up a weekly spreadsheet so I could tick them off when taken as it was a bit of a routine to get in to.
RCVP is seen as a milder type of chemo and is do-able, not everyone lost their hair when on it and side effects varied as we are all different.
Keep a daily diary so when you see your specialist or specialist nurse you can tell them how you have been, hopefully things will go smoothly and you will sail through it, its not as scary as we sometimes imagine and is do-able.
let us know how it goes
john
Hi again Rishard Kaitak, like John I had a stronger version of treatment (R-EPOCH) and again had a number of the drugs that are also used in R-CVP and I did ok with it all. My treatment was full on as I was in hospital for 5 nights/6 days on my IV 24/7 for my 6 cycles and I lost all my hair very quickly after the first treatment.
The Side Effects related to these treatments can be oh so different for everyone. I did have some nausea but I was never sick but 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 as they have tools that can help.
I found the fatigue did build up over time so take each day as it comes, rest when your body says rest but at the same time try and keep some activity going as this does actually help overcome some of the fatigue.
Avoiding infections is obviously very important but you will totally get this during these challenging times. Generally it takes about 48 to 72 hours for your body to break down and/or get rid of most chemo drugs. But the effects of the chemo on your growth areas and your general immune system will last for weeks and it is important to remember that you may well be more open to infections at about days 7-14 as this tends to be the window when our immune system is at its lowest and this is when you are more open to infections…… then your body recovers in time for your next cycle….. but the more chemo you have the longer the recovery can take so by the end of treatment it could take a few months this to recover completely
I would also highlight the importance of drinking lots of water as this will flush out all the toxins released by the chemo, protects your kidneys and keeps you hydrated.
Wish you well with your treatment.
Hi John, and thanks for the information,sorry, I have only just seen it (Saturday 5th). What did surprise me was how quickly the time went, prior to arriving, I wondered about the 7 .5 hours it was going to take, but I found that by chatting with the staff, put me at ease and with an Ipad, time just flew by.Thankfully I didn't have, and still haven't had any reaction to the R ,but my god you were right about the pills, I felt as if I was taking a pharmacy back home with me.
You mentioned that you made up a weekly spreadsheet, thankfully I didn't need to do that as Teo had done one for me,(not to good with computers!!!),so all I had to do is follow the chart.
Right at the beginning of my journey, my wife, got me to start a timeline ,which has been an eye opener,and i'm forever referring to it when speaking to the specialist nurse,as of yet though,with regards to speaking to the specialist, that is proving to be quite hard, as since I was diagnosed, there have been 5 !
Are you still undergoing treatment, and if so how many have you had? As mentioned this was my 1st, and with support from you and others, like yourself ,I know we will get through to the other side.
Further updates to follow, 2nd treatment on 24th
keep in touch ,stay well
Richard.
Hi Richard, its good to read you coped with the rituximab, it means things should be simpler and quicker with each treatment. If you have a good specialist nurse then you will be ok as they see to a lot that goes on, though 5 consultants is extremely unusual, but may be a sign of the times. I had 8 rounds of RCHOP which is a stronger version of the treatment you are having, but missing one of the drugs Mike had due to his being T cell Lymphoma. I had an aggressive type called DLBC (diffused large B cell) back in 2009 and have been in remission ever since and am now considered cured. Do keep us updated and we are all here to help as and when we can.
john
Hi Richard , I too was recently diagnosed and had mu first rcvp treatment on 29th march. I had a reaction to the ritixumab but the nurses were amazing and got on top of it quickly.
This means that during the further treatments I will need to be double dosed with antihistamines and steroids before starting.
I have to say that even though my second treatment is not until the 15th April I am already seeing a difference in the size of my lumps that are in my neck.
I really hope your treatment goes well and we. An all get through the other side.
I know it will be a long hard slog but we will get there.
Thank you Highlander you do not now how much you have been of help to me and Ty , followed you a long time it seems , I am just getting ready for my Treatment I am already disabled before this so bit scared had my couple of weeks of pity party NOW READY TO BATTLE Yes it feels like a big one I have NHL FOLLICULAR B
STARTING [ RCVP- CHOP ]
But you give me Hope seen watched you go through so much I was celebrating 5 years of freedom I came out of a heavy GASLIGHT Marriage of 40 year I still love him but now he is to me toxic can never return we live 6 miles apart Never seen him or youngest in there early 40
But very close to my Wonderfull 1 child & a out of this world son in law I’m lucky beyond words , but now life changes again my dog will go to my eldest for his usual summer holiday did this fro when I got him as thought I might not survive his entire life he is my companion, best friend who gives me unconditional love as I give him .
Wow I have lumps in my neck Dr diagnosis was cyst I could not see the dr as said not emergency by 5 lumps I went direct to Secretary of my oncologist fast movement then started in 6 weeks gone from tch wait to get ready treatment is coming sign & final plan on 12 May , got my eye tests for new glasses 3 days before so I can see through all this son in law made iPod ready full of music I had myreat sound out headphones before just ordered extra sun cream yes I use special one , & a new lounger for resting in garden , I got bench & Electric bed ready as well if I’m going to rest I plan to it in comfort after 2+ years of shielding I got get out letter day after diagnosis so I’m back / Never left shilding , saving fast as I can for a new electric chair but my lovely Dad said he will lp as I know walking is now going to be impossible I only did few feet before but it’s ok I’m going to ring the I have great family & special friends who will see me through , garden is important less risk see people outside , food is already delivered by Tesco fantastic service very carfull always , ok willatch you as your my lead let’s fight a good fight ️
Hi again purrwoman and good to hear that you have found the various posts on the Community helpful.
The uncertainty of going into treatment can be rather overwhelming but most folks find that once started, things tend to calm down. You may find some of these links from the Lymphoma Action website very helpful.
The first unpacks Chemotherapy Treatment in general and second one is Top Tips for the day of your Chemotherapy .
Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Lymphoma Online Support Groups for patients. I highly recommend these groups as there is nothing better than 'talking' with other who have walked the journey.
They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey. They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.
Always around to help out.
Hi can you tell me why first it was called RCVP-CHOP / Now R-CVP , What is difference with Chop my daughter is stressing me out big time talks like I’m dying on each chat , I want to win this battle but she sees nothing but so pessimistic , we’ll your disabled before treatment so you will be more I’ll than others I want to just thin best but I feel like she is seeing me unable to fight , I have lived with spinal illness & Asthma few other things lke we do with age your advice would be helpfull Highlander Ty
Hi from a rather sunny Inverness.
It’s not that unusual for chemotherapy regimes to be changed slightly or significantly...... even before treatments starts.
Your Hematologist will present his/her plan to the weekly hospital Multidisciplinary Team (MDT) meeting where other area specialists will review your other medical conditions and make recommendations where required...... e.g... I have Asbestosis so the Respiratory Consultant (actually a good friend) recommended a small change in light of what one drug 'could' do to my condition that may be seen as negative to my general wellbeing.
As to the differences - I had 6 cycles of R-EPOCH…… the letters represent various drug names used.
R-CVP is basically the same drugs as I had (but I had more drugs). The V is Vincristine is just another name for O in my mix standing for Oncovin.
The P in both mixes are basically the same drug with a small change as to how it processed by our livers.
It’s pure science as your Haematologist selects the drugs as to 'where' your condition is presenting and taking in to account any existing health conditions.
So your Spinal Illness and Asthma (I have Spinal Osteoarthritis, Asbestosis and Asthma) are all considered at the MDT.
Your daughter needs to get 'informed' and catch up with how treatable Lymphoma is...... what is she actually looking at?....... Is the information up to date and relevant to 'your' presentation?
The Lymphoma Action website is the 'go to' place for information as its well monitored and regularly updated.
The road we travel during Lymphoma treatments has two directions to follow.
There are two signs along this road one sign is pointing to Pessimism, a mindset that always sees the worst will happen, not appreciating that treatments can do the job, where stress and worry controls every aspect of life and as a result the journey is made extremely hard and draining.
The other sign points to Optimism, a mindset that is full of hopefulness, determination, confidence about the future and appreciates that treatments can turn the Lymphoma tide. It’s important to continually seek to choose the optimistic direction as this simple thing can define how you (and your family``) walk this cancer journey.
From me as someone who has been on this journey for coming upto 23 years tell her from me that she needs to get her head out of the sand and get on your side and put her Optimism mogo on ((hugs))
Whatever cancer throws your way, we’re right there with you.
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