First chemo

HI Chris ChrisYorks you will always hear that every journey can be ever so different. 

My main aggressive chemo had me on my 2 IV pumps 24/7 for over 120hrs over the 5 nights/ 6 days in hospital for each of the 6 cycles…..

On the first day my CNS had me up and out of my bed after breakfast, had me have a shower, get dressed then walked me round the corridor quadrangle for 15mins…… she then came back after lunch and dinner and did the same walks…… so I continued this for the other 6 days and did my best to keep active when I got home……  the funny thing about fatigue is the less you do the worse the fatigue and muscle mass loss will get

Hi Chris - I didn't get the same treatment as you, but some of the drugs are the same. My worst day by far was Day 1 evening. Then the other days my routine was go to hospital (depending on how tired I was I would take a 4 min taxi or walk the 1800 steps between my house and the ward... I was lucky), come back and go to bed. Leave the bed to get something to eat and go to the sofa. But no house chores, no putting the dishwasher, no cooking... I was too tired for that. 

So the first 4-5 days of treatment were like that. Then over the weekend maybe go shopping or something but realistically not more than 4-5k steps and that was pushing it. The second week was better but I was still very tired to do any sort of normal stuff. Only on the last few days of the 'rest week' I would be able to recover and have energy to go for a long walk and do some cleaning around the house etc. Loads of sleep to, easy 10 hours a day when I was never sleeping more than 7. 

So, pretty normal I'd say, the blood test results will also shed some light as if your white and red cells drop significantly (expected) your energy just goes to zero. And it is good to have a 'physiological' explanation for your tiredness.

With other type of cancers you hear people managing to get some exercise and continue a sort of normal life, but this is systemic treatment at relatively high dose, affects your whole organism, so the impact on the day to day is greater.

hi chris

just a short journey through my cancer

i was diagnosed in june following scan didnt have any symtoms

was referred due to being ex smoker

was started on chemo later on in june following all sorts of tests and scans

after first treatment i had a picc line fitted which was a godsend

i was told i would have 6 cycles each cycle consisted of two treatments treatment was every two weeks

but i was at hospital every week to have my picc line cleaned and bloods done

as far as side effects go first one was very loose bowels hour or two after treatment,fatigue and general listless,had a pet scan after two cycles

appt with consultant to discuss pet scan

they were very happy with results

unfortunately treatment was taking a toll and one week before treatment i collapsed /fainted once a day for a week

i mentioned this when i went for my treatment.oh they said looks like we,ll have to cancel treatment this week. i was left in chair waiting.next thing 2 parademics and stretcher for me.i had postular hypertension and treated for sepsis 

spent a week in hosp.they lowered doseage in one of meds basically i had a month off chemo then resumed.finished my treatment week before xmas.

had my follow up scan in feb and have appt in march

ps this is the shortened version

hope everything goes well chris good luck 

Morning Chris,

I did two full rounds of ABVD last Summer before being moved to escBEACOPdac but I can confirm that the first round of ABVD was the toughest of the lot for me. Felt fine the first two days and was feeling really cocky and then, like you, it hit me like a ton of bricks: arm pain, heart burn, hiccups(!!), jaw pain, kidneys aching - it was TOUGH. But I found that it did get a little easier each round as you learn how to manage the symptoms.

Be aware of the mental side too - I found the steroids on ABVD could cause pretty intense depression which suddenly dissipated on around day 7/8. 

Thinking of you!

Just spotted that your body is keeping you awake as well! 100% I struggled with that too - nothing was able to get in the way of me and my sleep previously but ABVD I was lucky if I was getting 5 hours in a night - the steroids are pretty brutal for that! The odd nap during the day came in handy for catching up on sleep…

Hi Chris, I remember my first day of chemo, and I had a very similar experience to you. I firstly want to offer you all the good luck and prayers; you are so strong, and the beginning is challenging as there is a lot of uncertainty and your body is adjusting to a lot of new things. I will give you some advice that really helped me during my time with Lymphoma and helped me to manage the side effects from chemo. My fatigue and nausea were really awful at the start of chemo, and my mum urged me to go on a walk with her every day, which we then started doing daily. It might seem counterintuitive as the fatigue is hard to deal with, but finding that strength to go on a walk, even if just around the block made such a difference for me and frankly made my symptoms almost disappear, the side effects before doing some sort of physical activity and after are like a night and day difference. Particularly right at the beginning of new chemo rounds, before the symptoms get really bad, do try to do your best to get yourseld outside and do some physical activity — the extent of my exercise was walking in the park, but the difference it made is astounding. I can't stress enough how much it helped me and made my symptoms manageable, so if you feel you have the strength, give it a try :) Wishing you so much good luck, and you got this — I'm 8 years remission, and Macmillan are the absolute best, you are in safe hands :) 

Hi Chris, I started my first round of chemo last week, Like you I was in hospital for a week  for observation. I came home on Friday, felt ok but Sunday felt like I had done twn rounds with Tyson, very low, unable to get into a. deep sleep at night.

Friends are asking how am I feeling, I am just not sure how I should be feeling? 

GOOD LUCK we will get through this x

Best of luck with it Lymph58! It’s a gruelling six months but you’ll both get through it! I found the first few rounds are the toughest but then you get better at dealing with the side effects. Thinking of you and Chris at this nightmarish time!!