R CHOP CHEMO

FormerMember
FormerMember
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Hi everyone,   I have Hodgkins Lymphoma  not NHL. but they have decided to treat me with R CHOP chemotherapy instead of ABVD as I'm at stage 4 ( they found it in 3 different places which included below the diaphragm).   I'm just wondering has anyone had this treatment? What is the success rate??

  • Hi Samiee, welcome to the nhl group, if you have the type of lymphoma I mentioned on Friday night then the success rate is very high when using rchop to treat it. Rituximab weakens the b cells and they are easier to destroy. Lots of folk in this section have had rchop so we can help you through treatment. 

    Let me know which day you are going in for treatment and I will share what to expect, it helps to keep a daily diary recording how you are and how you are reacting, Drink lots of fluids to help flush the toxins out and ease the pressure on your kidneys and try to walk everyday it helps and it has been proven to have a positive impact on outcome. Watch out for the steroids and not sleeping and they can cause mood swings too. Just remember not everyone suffers all the side effects, but hair loss is one you will need to think about. Getting your hair cut short can help and slow down the process.  Finally for now constipation will be the other thing you will have to deal with. 

    catch you later

    john

    we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
  • FormerMember
    FormerMember in reply to johnr

    Hey John, 

    They didn't tell me what exact HL I have but I'm going to call my nurse tomorrow to ask more about it silly of me not to when I saw her on Friday. All she told me to why I was having this treatment is because I was stage 4, where the scan picked up not masses of HL but in 3 different spots. 

    I start my treatment on Wednesday, is it odd that I'm looking forward to it? After everything I've been through I finally feel like I'm getting somewhere I know it's a step closer to hopefully being in remission. 

    I'm not really concerned about losing my hair after all I've been through the worst possible thing so I doubt losing hair will even come close. I guess it will be a bit tragic when I actually notice it but making an appointment to get my wig made ☺. 

    Thank you for the advice so far.. I was reading about the anti body it's making me feel better about the treatment that I'm going to receive as it helps detect and fight the lymphoma better.. 

    Also the steroids is going to be a problem as I already suffer from insomnia and have a lack of sleep at the minute. So not looking forward to that lol 

  • What you are feeling is normal, now you know what you are dealing with you just want to get on with it and "get back to normal"

    also why would you know to ask what type as the are only a couple of types of HL, you will be fine and the HL people you already know will support you too, the other good thing about rchop is its once every 3 weeks, longer sessions but not like abvd where its 6 cycles with A & B cycles meaning 12 sessions.

    john 

    we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
  • FormerMember
    FormerMember in reply to johnr

    So does this mean il have 6 sessions?? 

  • your nurse will tell you how many, sometimes its 4 others 6 and challenges like me get 8, normally you get a mid point scan to see how its working.

    we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
  • Hi your first treatment may be a long one as no one knows how you will react to the rituximab, but I touch on that later. You will get a cannula in your hand, and then you will be given some of the drugs, antihistamine, that will make your nose itch, anti sickness and the other drugs, here is a link if you have not read it, easier than typing.

    http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Combinationregimen/R-CHOP.aspx

    The rituximab is given slowly at first and if you are ok they increase the flow and so on until you have had the full amount, they will check your temperature and blood pressure every 30mins if you feel anything like an itch or sore throat tell them straight away and they can slow the infusion down again. After the first R it normally goes smoothly and quicker.

    You will get lots of tablets to take home so you may want to set up a sheet so you know what to take when, for the first 5 days with the steroids you could be taking 15 tablets a day.

    Check that its the hospital you contact with any health issues rather than the gp, it was for me.

    Don't be surprised if a treatment is delayed once you get into it due to low blood counts especially your neutraphil count, they need that to be at least 1 to be able to give you treatment.

    Drink lots, try to walk most days and stay away fro crowds and becareful around children as they tend to carry lots of bugs, they may give you a thermometer, ask if they have any if they don't.

    If you get tingling in your hands and feet keep a record as thats a side effect of vincristine and if it gets bad they will drop or reduce the amount they give you.

    You will probably get a metallic taste when you eat and may not enjoy food, its important you do still eat and drink so little and often if you have too, I found spicy food went down well, i went off coffee for 6 months and ended up drinking tea and water.

    You will get into a cycle, knowing when the good days are, it tends to be around day 10 to 12 you will feel better, just ready for the next round of treatment, and as it goes on you may feel tired. listen to your body and rest, fighting it only makes it worse.

    Good luck, you can do this and try to be as positive as you can be it does help and when you have a black day, take it easy on yourself.

    any questions just ask and good luck with the constipation.

    john 

    we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
  • FormerMember
    FormerMember

    Hello and welcome to the site.

    I have DLBCL which transformed from follicular lymphoma (although I was not aware I even had it!)  Anyway, had 8 cycles of R-CHOP, one every 21 days, and finished in October 2015.  Personally, I am still waiting to find out whether treatment has been successful as I have had to have repeat scans.  However, I think the success rate is very good generally, although that will depend on your personal circumstances such as age and general health.

    I had the doxorubicin (also known as Adriamycin) on only 4 of my 8 sessions because of cardio-toxicity issues, but have to say that the chemo generally was not a problem.  Yes, I felt tired, and this got progressively worse as the number of cycles were completed, but they are cumulative so that is to be expected.  Yes, my hair fell out, but really that was not a problem for me.

    Minor issues which persist, peripheral neuropathy, itchiness and very sore and bloodshot  eyes - exacerbated by losing my eyelashes.  When you think of hair-loss you don't always think about eyelashes, eyebrows and body hair!  I did go off a few things appetite wise, most notably alcohol, but did not lose any weight (although I was told I definitely would).  My wife just prepared whatever I fancied, and had lots of both healthy and unhealthy snacks in the house.

    The first session took a very long time as the Rituximab (R in R-CHOP) is given very slowly to ensure you do not have a reaction to this.  The possible reaction is described as anaphalaxis (although it is not anaphalaxis in fact).  Anyway, other than that, I found that once the drugs were delivered to the chemo unit from the pharmacy, sessions took about 3 or 4 hours.  The pharmacy don't get the drugs ready until you arrive as they cannot afford to waste them at something like £1,000 a pop!

    I was fortunate in that my brother in law is a biochemist and actually works on the development of monoclonal & polyclonal antibodies, and biosimilars, so I had expert advice on the Rituximab, and a host of other issues.

    Take a good book, or a crossword, and wear comfy clothes.  Make sure you have something to drink and some snacks.  My chemo unit had water and squash available, and also came round with tea/coffee and biscuits, so I did not need to take anything with me.

    Drink lots of liquid.  I drank 2 to 3 litres of water or water/juice mixed every day, although this meant I had to get up several times a night to use the loo!  Make sure you drink lots immediately before chemo and blood tests as this will help with them find a vein.  No caffeine - which has the opposite effect.  So water, or decaff.

    My chemo unit also gave me mouthwashes and anti-sickness drugs, and I did not suffer with mouth ulcers or sickness at all - not at any time!

    They also gave me something for constipation, but I never used it as, again, I did not suffer with constipation at any time.  Worth remembering that keeping up your fruit and veg intake will help with this.  I eat 6/7 portions a day anyway, but you might find something like prunes or grapefruit at breakfast will help if constipation is a problem.

    What else?  Infection is a very serious problem, so keep the hygiene and hand-washing regimes up to scratch.  I never went out socially or went to a pub/takeaway at all, and they will advise you not to eat particular things such as uncooked eggs, take-aways, etc.  I was so tired I did not want to mix so was pretty isolated, and never picked up any infections although my neutrophils were borderline at times.  Also, I was so tired, that I could not manage to exercise at all.  Even walking up to my shed was a major feat!

    They will probably give you a thermometer and ask you to take your temperature every single day at the same time, so you can monitor any signs of increased temperature - thus a warning light for infection.  You will be given instructions of what to do if your temperature increases, or you feel unwell.

    I was very well looked after and my specialist haematology nurse rang me frequently to see how I was.

    Now, I can't think of anything else that might be useful to know, but this website is a great help when you have questions, and there is lots of personal support to be had from other members.

    I am 76 and have some cardio issues, so I would say, think positive and you will (hopefully) find that it is all much less horrible than you expect.

    Good luck, and let us all know how things progress.

  • FormerMember
    FormerMember in reply to FormerMember

    Wow thank you for all the information I feel  so overwhelmed right now everyone's saying they can't believe how positive I'm staying buy deep down I just want to break down. I feel so selfish for feeling like it im just really overwhelmed with everything. On the plus side I have my wig... but considering just wearing a headscarf when it comes to it . 

  • Hi, its the fear of the unknown and what is it you are dealing with I would guess, after tomorrow and you are 1 treatment down it will all be different, just remember (I know we all say that alot) little steps and a day at a time.

    john

    we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
  • FormerMember
    FormerMember in reply to johnr

    Hi John just to update you was indeed right about the type of HL I have