Just wondering if anyone could give me advice or reassurance . I have just started round two of second line (carbo gem avastin)and from the start I have been hit by fatigue like no other . I didn't suffer anything like this in front line and finding it disheartening . I literally can't walk to the door sometimes . I have young kids and while appreciative of the great help I have I feel like I am missing out. Wondering will I get back good quality of life when finish treatment . I had major surgery end of sept of I am in worse place starting out. Bloods were borderline this week for treatment so that is prob causing probkem too. Supposed to be travelling to inlaws this wend 2 hours away and from there an hour away on the Saturday to visit Santa . Wouldn't miss it for the world but wondering when I will start enjoying life and not just getting through. I have really bad back ache at moment which is making things seem worse. Sorry for such a moan..any encouragement appreciated
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Susan3
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Sorry to hear you are having a rough time of it. I am a relative rookie but have had terrible fatigue on carbo/taxol...eventually discovered that my iron levels were through the floor. Felt so much more able to cope after a blood transfusion. So talk to your team, ask them about your blood results and see if they can do something to alleviate the problem xxx Lyndall
I think Lyndy may be spot on here. Please talk to your team and tell them how you are feeling and about the back pain. They should be able to help you.
I am feeling exactly the same and it's really frustrating. I'm on second line but it's Carbo/caleyx combo. I have had my bloods checked and they are ok. I did need a couple of blood transfusions when I was on Carbo/taxol and after surgery.
This time is so different and it's getting me down. I had a chat with my Oncologist last week and he basically said I need to be kinder to myself and also offered to reduce the dose. I refused that as it is working as my markers are reducing so don't want to mess around with it. I've had 3 so far and will be glad to get remaining over me. I am trying really hard to stay awake and positive
Xo
HI Susan, I had Carbo Gem, first time around it wasnt so bad but had Gem/avastin in 2013 and it did knock me for six. Gem has alcohol in it and after the Gem I would come home have to go to bed and wouldnt stop shaking for a few hours, then it passed. The Gem does hit the white blood cells so be careful you use hand gel etc. Avastin can cause stiffness in legs and back so it could be that. Best to ask your team when you are in next for treatment. I found getting a steroid did help and they reduced the strength of the Gem. The end result was good, 125 came down and stayed down so far. I finished two years of Avastin about 6/7 weeks ago. You do get tired but rest when you can
I do sympathise, the big symptom throughout my 20 months of treatment has been fatigue. I really struggle and my girls are late teens so goodness knows how you get through a day with little ones.
So my first bit of advice purely based on my own woo fully inadept experience would be to give yourself a huge pat on the back. You are already doing brilliantly as my wonderful psychologist is always trying to drill into my dense skull, you have now been forced to take on an extra full time job, namely managing this vile cancer.
This management requires many new skills not least dealing with fatigue (which of course is a wholly inadequate word to describe what you are going through) Pacing tasks, balancing rest and activity, conserving energy where ever possible and prioritising what's important works but takes a lot of doing when you are used to ramming as much into every minute as you possibly can.
Perhaps the thing I have found most difficult is accepting that our lives have changed. Reachieving normality for me and my family was always my overwhelming goal. Now I have to stop putting that pressure on myself and let go of the guilt. Normal has changed now and that certainly is not all bad.
Sorry if this sounds preachy.
All the very best Julia
I think your fatigue level is telling you you're trying to do too much at the moment.
This is quite early days after major surgery.
We do all react differently to different drug combos, but so much depends on our diet, the other demands on our time, our general state of health. One size doesn't fit all. I'm on my fourth chemo in 7 years ( carbogem without the avastin) and I'm a bit surprised not to have been hit by an energy crash....... yet. Tiredness does seem to be the thing with gem.....
I would look closely at your blood test results, especially if you can track back over a period of time - your chemo diaries may help you do this. I realised that my normal was at the bottom end of the normal range for all of them and so when chemo hit, there wasn't far to fall. Last time around I did a diet intended to boost the counts ( you can see the details if you scroll through my posts). I've lost some weight since then and take more exercise and I think that may be helping too. I take a lot of supplements.
Although the fatigue hasn't hit yet, none of this helped with my neutrophils which were too low yesterday to have day 8 of the gem. So take my advice with a pinch of salt!
At the risk of sounding preachy..... let the rest of the family travel for 3 hours - you don't need to do this.
It gives you an opportunity to have a good rest on your own without the little ones. They'll love telling you about their adventures and you'll love hearing about it. You don't need to be there.
I'm sure your in-laws will understand that if you are to survive the over the top family festivity and consumption fest bearing down on us all you need to do this. Children do not need to see Santa. And someone else can take them if they think they do. You don't need to. Yes, I do remember being taken to see Santa when I was little. What do I think about it? Don't ask.....do I remember who took me? No!
Chemo's not like taking antibiotics when you can often carry on as normal. Chemo can be like being hit by a truck. You can get back to normal when you've finished the treatment, that might be more realistic than wanting normal while having treatment....
I think of chemo as time out from normal. Your kids will keep you in touch with a lot of normal, but you need to manage out as much of it as you can if you're not up to it...The better you get at doing this, the more you will be able to enjoy the moments of everyday pleasure life brings even while having chemo.
If you were to ask, I think you'd find a pretty impressive list of things we on this site we didn't manage to do while on chemo, which we'd have expected to have struggled to do. In my case this includes weddings, funerals, letting people down and theatre tickets down the drain.....
Hi Susan, sorry to hear you're going through such a tough time. I cannot imagine going through chemo with little ones around. Please be kind to yourself. I suggest making it a mission to accept all the help you can and take all the short cuts to make life as easy as possible to save energy for smiles and hugs.
I relatively sailed through first line of carbo/taxol (no delays) and got back to full time work quickly. However I struggled with gem/carbo/avastin and felt floored. I needed a delay and filgrastin immune boosting injections and only managed 2 doses of day 8 gem. I was assured that this was a perfectly normal response to the treatment. I coped with the fatigue by having a daily afternoon sleep during my first two weeks after infusion. I did manage to attend my daughter's hen night tho (buoyed up with the steroids that the Christie kindly provided ), five days after I my last infusion. The good news is that treatment worked and I'm doing well.
Not sure if this is any use at all but remember to invest in yourself over the next few months. We all respond differently to different chemo's but I found this one tough.
Get your blood checked. But please be kind tonyourself, if you have help around to do the boring stuff with the children, accept it. (For those ladies reading that don't have family around they should contact their Adult Services (Social Services ) for extra help). Cherry pick the nice jobs to do with the children. Chemotime and wedding days are the only time we can get away with being a princess!
Wishing you back to health and much love. Sandra. X x
Like others have said, take care of yourself. i had carbo/gem/avastin for first recurrence and I was ok for the first 2 apaert from days 3 to 6 but the third one really knocked me out. I ended up going into the unit and having tests and a chest xray but they found nothing wrong. Then the 4th didn't affect me so badly but the 5th and 6th were worse agin. One of the nurses said I might have had a virus as well so my system was struggling with two things at once. I did recover quite quickly after the end of the treatment although I stayed on avastin for 18 months. I've been walking the Pennine Way this year so certainly got my stamina back !
Thanks to all for really great advice and reassurance that things will get better. My expect ions are more realistic now. I int be to prioritize what's important to me and turning into a diva overnight ! . I feel really lucky to be part of such a great community where such good advice and encouragement is given so warmely. We have dinner booked for a fantastic restaurant Tomor night but if I'm bad I'm going to cancel and send hubby off to chipper! My sister in law is minding kids in her house , God bless her! Hope everyone has a lovely weekend xx
Hi. With a young family to cater for, and a planned busy weekend, I am exhausted just reading it. The only thing I can suggest is take lots of rest - when you can. I am just finished 4th line chemo and overdid it a bit for the past few days - with the result I was so tired yesterday evening that I had to go to bed at 6pm for a sleep. However, before I even got into the bed - I missed the door and walked into the door jamb and then dropped a full glass of water on the bedroom carpet. I dealt with the latter by throwing towels on the ground and straight to bed...felt much better at 7.30pm and did sleep all night later.
So the advice I give - is to rest before you head off for the weekend and before you head out on all the wonderful visits. Things do improve - believe me.
Sending you warm wishes for energy and a wonderful Christmas.
You might need a blood transfusion. My count was low but not as low as they want it for a blood transfusion but my doctor decided to treat the symptoms as I could not walk I was so week. The blood transfusion worked wonders. Wouldn't have made it without it. Sometimes the blood work doesn't tell us everything as we are all different. What is too low for us, might be different from what is low on the charts.
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