Sorry if this question was asked somewhere else, I'm just learning how to use these boards! My dad (74) was dx recently with Diffuse Large B Cell NHL. He just finished his second round of R-CHOP 21. Can you please share your experiences on what side effects you had and when you started to feel better in between treatments. It is day 11 since his chemo and today may be the first day he has felt "okay". Any and all experiences would be greatly appreciated. Thank you!
I can't believe I just replied to you and lost it!! I will try again.
I found the first two to three treatments the worst. i was admitted into hospital after doses 1 and 2 for different reasons.( it is in my profile if you wish to read it.)But after dose three I found I could tolerate it a bit better. I am not saying it was easy but you learn how to work around it.
I was finally able to help my daughter choose her wedding dress when she had done most of the leg work!!
I still got very tired but that is understandable with the chemo, but found you could work around it.I found I had to take it very easy in the first week virtually just sitting around not doing much at all.But in week 2 and 3 I was able to go out and felt I had my life back but obviously on a slower scale.Then its back to the hospital for more chemo and you feel a bit miffed as you begin to feel better and they make you ill again!! But when you feel so poorly just think what its doing to the cancer!!
make sure your dad tries to eat etc. i found little and often the best.
youd dad has the same type as me, mine was stage 4 do you know what stage your dads is?
On a very positive note I have now been in remission just over a year and it feels great.
Hope this helps and your dad feels better soon.xx
Thanks for the response. Upon dx, they said that my dad was a stage II but if it was in his bone marrow, it'd be a stage IV. Well, we recently got the results of the bone marrow and they were negative (good news), but then the doc told my mom it was a stage III?!?! Don't know what that means, and she didn't ask! Maybe it was this stage because of the size of his mass (9 cm groin mass) or maybe in the PET scan they saw it in another place - nobody asked so we don't know. However, from my understanding, no matter what stage, it is all treated the same.
Thanks for letting me know when you felt good again. I think yesterday evening, day 11, he started to feel ok. For the last couple of days he had been dealing with a "cloudy head" feeling. Is that normal? Almost like having the flu. He wasn't too nauseated in the last couple days, but was very nauseated on days 6,7,8. He still doesn't walk around very much because upon diagnosis and the month prior, the mass in his groin/hip area was prevented him from moving his leg and he was in SEVERE pain. It took them about 3 weeks after hospitalization to discover the mass and then biopsy and get results. It was a long haul. In that time frame, they had him on heavy narcotics and laying still in bed. He had lost 30 lbs. Now, that the pain is completely gone from the mass - it went away after 1st treatment, he is very weak from not being used to walking. He does try to walk around the house everyday and do "laps". He has a walker for support if needed. Even though he's 74, he's a young 74 year old and just months prior to the dx, he'd be on the golf course all day. Hopefully his strength will return enough soon so that he can be a little more active during this grueling chemo process.
If you can let me know what your actual side effects were on the days following treatment, I'd greatly appreciate it.
Hi Dee, have you mentioned that your dad is having a neutralasta injection its the one that boosts the neutraphil count, if so then that will be why he is having flu like symptomps around days 6 to 11.
I found that each of the 8 cycles were slightly different and I think as you become acustomed to the treament then some of the side effects do not feel as bad. the steroids would keep me awake most of the night for 3 to 4 nights so day 6 I would crash and feel very tired this would last generally till day 10 then my taste would start to return, mouth sores would go and I would start to get on an even keel so to speak. The injection I believe, gave me a sore throat and also impacted on my voice and tone and this would last till about day 15 or 16 and it was only the last 7 days I was as good as I could be. No energy most of the cycle and it gets worse through treatment, breathlessness most of the time but worse around days 3 to 12, only sick after 1st and second treatment as they gave me a special med that I took for 3 days and it was very good.
Did not lose all my hair, lost weight initially then put it all back on and more in 2nd half of treatment. Was neutrapenic for most of the treatment, had peripheral neuropathy and vincristin had to be stopped after 5th treatment, have chemo brain - short term memory loss, had periods of feeling cold even though it was summer, and probably a few more.
But the important point many of us make is you can and do live with most of them(side effects) and they are managable if you have a strong mind and have determination that you will win. Its not easy, but there were always alot worse than me in the day unit. I also had to have a slow infusion for the rituximab as I had a reaction to it but towards the end of treatment we were able to up the rate as my body got used to it. The day after treatment was normaly sleep.
I also found treatments 6,7 especially and 8 hard and it took longer to recover, but the good news is I appear to be clear for now and its worked, will know for certain after next pet scan in late Feb.
hope this rambling makes sense and ignore spelling mistakes its the chemo (or thats my excuse)
regards .... john
It sounds as if they caught your Dad's lymphoma just in time. It's a symptom free b**r sometimes. As with your father, i found the first dose of R-CHOP quite remarkable in the way that lumps shrivelled up and went away.
Different people have different side effects.
I had nausea and vomiting for 24 hours after chemo in cycles 4-6, and queasiness in nos. 7-8
Diaphragm irritation and hiccups on days 3-6. The hiccups were dealt with when my consultant prescribed omeprazole. This was about the same time as my "nocturnal restlessness" aka midnight yibbles.
Ulcers a couple of times near the end of cycles. Colgate mouthwash should be avoided. I was prescribed Orobase paste and difflam mouthwash which between them kept my mouth OK..
Touch of constipation after a few days, but nothing sennacot wouldn't shift. Sore backside once the constipation had eased.
Your father will knpow how much exercise is right - he probably shouldn't go outside at the moment while it's very cold.
Im so glad you started this post as my mum has just had her second round of R-CHOP for Diffuse Large B Cell NHL also. The scan revealed it was in her stomach, back , groin , undre arms, but main mass in her neck. The bone marrow was clear, thank God. I thought mum done quite well after her first treatment but after the second one she is just so so weak, she is even to tired to wash and dress herself now,. Its heart breaking to watch you loved one go through this. She seems to be getting a good nights rest ( even whilst on the steriods for 4 days) and all she is doing during the day is sleeping, she is 77 , came through bowel cancer 7 years ago and now this. Ive taken over all the household chores which isnt a problem , my thoughts are i just pray she come s throught this, she just seems so so weak after this cycle of chemo, I will keep reading the posts here as know I will get some support. She wasn't even well enough to go to church this morning , mind you i was glad because we dont know who has the cold or carrying germs and just dont want mum to pick up any bugs.
I am worried sick about her, is it normal to feel so so tired after second chemo ??
Thanks again for your posts. They are helpful.
Regarding the last post, we seem to be in very similar situations with my dad and your mom. What date did your mom get her cycle 2 chemo? My dad is on his 13th day of this cycle and feels "okay" but very, very tired. He's only sponged himself for baths for the last 12 days, today is the first day that he's had a shower. When I asked him how he feels, he says he feels no pain anywhere, not nauseous, it's just all a "stuffed head" feeling if that's a way to describe it. I'm assuming like flu-like feeling when you have a head cold. He does get dizzy every now and then still. After his first cycle, from day 10 til his next chemo, he was "pretty good", but after this second one, its taking longer to recover, I find. He did get a Neulasta shot the day after this chemo this time to help with his blood counts and as John described above, that could be why he's feeling different this time around. (Thanks for that John). Also, if you read the above posts, you'll find that what your mother and my dad are feeling are pretty much "par for the course" with this chemo. Our parents are also older than many on here, so I'm assuming the chemo will be harder on them for that reason alone. I guess one thing we have to keep drilling into their heads is to keep positive, believe you'll get through this and walk, eat and drink, even if you don't want to, at least a bit everyday and not to give up. It is a hard process, but one that isn't too long so hopefully the end will come soon and this will all be over. My dad does get out of bed everyday and will eat breakfast, read the paper, watch TV. He has been napping lots lately, which I guess is normal. He just wants to feel good again and I'm hoping it will come soon. As John indicated above, he didn't feel "ok" until about days 15 or 16. For my dad that will be in a couple days. I hope John replies again and lets me know what he felt like when he was "ok", that would be helpful. Otherwise, I wish your mom well and my advice would be to keep her positive and strong and she'll get through it.
with the r-chop but then i only had the chop as i couldnt have the retuximab at first....
i was ok for maybe 3 days after the c-h-o-p chemo, i think the steroids kept me wide awake......
then for about 10 days i felt really tired out and sick, but i wasnt sick......sore mouth as well...no taste......
then i would start to feel abit better each day for the next 8 days....
and just as i felt fine on day 20 / 21.....along come the next dose on day 21
like most have said it can be different for everyone...oooo it made my hair fall out as well and i sure had a problem going to the loo......arggghhh...movicol never worked....in the end as mad as it sounds some one bought me a box of thorntons choccys.....and that did the trick.....infact every time it got bad and i couldnt go to the loo its was a box of thorntons choccys that did the trick everytime......lol.....but true...
hope things go good for those on r-chop and c-h-o-p ....
Hi Linda, whilst I am younger than your mum and therefore should find it easier she is following my pattern of experience so don't worry.
I remember well the first one and whilst I suffered a little it was not bad and I told everyone if this was how it would be then no problem. But it was not and whilst the second treatment was not as bad as it would get, it was worse and I slept more and generally felt more tired. I was also anemic after the second treatment, was still loosing weight (if I remember correctly) and my neutraphil count was very low, down to 0.3 and my 3rd treatment was delayed by 5 days. So I was going to be rough.
So what I am trying to say is as the treatment impacts on us we are going to be worse, try to use the blood test results as a steer as to how your mum will be, its a good starting point but not the whole picture though, as will and determination will also impact on what your mum will feel like trying or doing, thats the same for your dad too Dee.
Just remember, a day at a time and listen to the body, but to try to do things.
A lesson I learnt later on was fluids are important so keep intake high throughout each cycle it does help.
best wishes ... john
Hi Dee,...... it was my consultant who told me about the flu like symtoms when you have the Neulasts injection as he took part in the trials when a registrar, as his boss was running one of the trials. I always felt that the injection compounded the feeling of being tired and cannot be bothered, but without it I would have struggled to receive my treatment.
So how did I feel? .... tired still but human if you can understand that, still had to push myself to walk and walks were not long, but I felt better for them. I ate well still would nap some days for an hour in the afternoon but felt ok doing things so long as I did not push hard. Would still be breathless at times and still am now, that last for a long time I understand.
I do know that attitude impacts on how we react to treatment, as you say push - to do, eat and drink little and often if thats how it has to be. Some people I met who allowed the treatment to dominate them and the cancer I think, struggled with the treatment, they lost weight and did little so it became a vicious circle for them and they could not break the cycle. I know that can be easy to say and difficult to do at times but all you and Linda can do, to support and motive your parents, then it will have a positive impact and improve their quality of life, I firmly belive that from my experience, but thats my opinion.
As always any questions, happy to help if I can,
Best wishes .... john
Mum was on her second cycle of chemo on the 6th so this is day 5, last day today of steriods so she shoud sleep better. The day before she got her chemo, her bloods were taken and they said that her white cells hadnt recovered but were recovering and went ahead with chemo next day. He said that maybe they would have to postpone the next chemo date if the white cells havent recovered. I will mention the Neulasta that i see in your post that john has mentioned, im so glad you are all here to help us help our loved ones. She is experiencing pain in the areas of where the cancer is , im wondering of that is normal. The doctor had called our home to see how she is so she has upped her pain kiler in the mean time. I took off the rest of her hair today, her beauty still shines through which is a blessing. The wig lady is coming out tomorrow so she will choose something. She has a cup of soup and said mmm that was nice so then she tells me she wasnt tasting the same but i had read that on the posts so was able to tell her that its normal to be like that. I think someone aslo mentioed that there is mouth washes that she can have so will spend tonight reading all the posts. I wish you dad well also, thank goodness our parents have us there to support them through this, I stil have my father but his love is the pub and not mum sadly, not to worry thats nothing new, i am there and thats the main thing. Like your dad mum eats little but often, she is a good drinker, drinks lots of fresh water which i know is good for her, yes we will both be positive and strong for them, they need us
Take care of you too
Thanks again John. One other question - when you went anemic after cycle #2, did you get a transfusion, or did the levels come back on their own? My dad was a bit low after cycle #1, we are suspcious that he may be lower now after #2, but don't know for sure. He has some of the symptoms of being anemic. What did they do for you?
Thank you so mjuch for sharing your experience with me , it helps me to help mum. Did you ever have any pain where the cancer was?? More aches mum gets but pain is in her stomach. I think my attitude with mum has been good, i was in bits the other day but thankfuly thats the first time she has saw me cry. I just broke down when saw the hair that she had left was all falling out whilst in the shower, Ive taken it all off now and she will get a new wig soon, I try to remain postive for mums sake and reading this board is really such a great help. I must admit im trying to protect her by encourgaing her to stay in but i like what you said a little walk every day and she will benefit from the fresh air. She said if she is strong enough she would like to go shopping tomorrow for an hour, i do hope she is strong enough as she loves the supermarkets. When the chemo is given does it work until the next cycle or just for a few days once in the body? These are questions i shou,d be asking the doctor but they have just came up now and not back at hosp until next month, thanks again
Hi Linda the mouth wash was difflam and in the second half of treatment I would use it twice a day to control the risk of sores or a sore throat and it helped me.
My lymphoma was in the abdomen and small bowel and yes I had pain, cannot remember whether it was after 3rd or 4th r-chop that mass pain finally went. Other pains are often linked to constipation, wind etc plus one other side effect they don't mention is kidney stones which I now have in both kidneys.
You also become very aware of pains and tend to associate them with the mass and that will not always be the case.
Re how long chemo stays in the body the honest answer is not sure some nurses would say 3 to 7 days but when they talk to you about scans then they say 3 weeks for a CT and longer for a PET to ensure the chemo is out of the system. However another user shared that her consultant at Christies said by 2 weeks after final chemo that they could get a true picture of whats happening on a PET scan and no need to wait 6 weeks. You will find that each consultant deviates in differing ways from the national guidelines.
Stay strong ... regards John
Hi Dee .. no I did not have a transfusion as the count came back up and during the second half of treatment I managed to get the count to 13 which was good. However my other counts went into free fall and had I not had shingles then I may have come closer to having one as they were concerned and keeping an eye on me & blood results.
Think you mentioned as well that your dad was light headed at times, see if you can borrow a blood pressure machine as he may have low blood pressure at times, I did and have a machine so knew what was wrong. Sometimes this can be due to low potassium and bananas are a way to fix this but check it out to see if you/doctors can identify why he is light headed.
Linda ... meant to mention Neulasta injection is I believe purely for the neutraphil count not the white cell count.
Ask for your parents results each time they are done and keep them as a record, that way you can see how they are doing.
best wishes ... john
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