6 February 2018 at 6:35 pm #56440
I am new to this forum but am hoping I will find it helpful speaking to people who understand my condition.
I was diagnosed with net cancer in 2014 and had Whipple’s procedure in 2015 to remove the primary tumour from my pancreas and also had a liver re section to remove the secondaries in my liver.
I have since had two liver ablations and am on monthly sandostatin injections.
Whilst I am doing well I have been recently suffering with bouts of fatigue where everything seems a struggle and I get very weepy and frustrated. I work full time in a warehouse and have been considering cutting my hours to see if this will help. The problem is I have always been independent and worked hard and am finding it hard to accept that maybe I need to do less.
I spoke to Nicki one of the net patient foundation nurses and she assured me that what I am feeling is perfectly normal but I would love to hear from anyone who may have advice or stories to share about fatigue and how to deal with it.
I worry that cutting my hours is giving in and people may think i am pathetic but if I continue to struggle it means I can’t enjoy my time off as I am too tired to do anything.
Is it worth reducing my hours in the hope it will give me a better quality of life?6 February 2018 at 6:57 pm #56441
Hello Tasha, a very warm welcome, glad you have posted. Also very glad that you have had a word with Nikie. Unfortunately, this fatigue is part of our ‘condition’ sometimes, it gets really bad, a friend of mine described it has waking up with a certain amount of energy, and when it’s gone, then it’s gone. I did write it down exactly what she said, I will try to find it but that is how it is, some days you can do things, other days, sometimes, I do not have the energy to even pick something up, it I have dropped it. Have a word with your oncologists and see what they say about reducing your hours, etc. I had the other end of my pancreas removed, the body and tail, plus spleen, and I am also on the Sandostain injections. Do you take Creons/Nutrizym 22? have you had your vitamin levels checked? Keep posting, you are not alone, I have to go now, but i will be back later, always here for a chat, Carole.6 February 2018 at 7:26 pm #56442
Thank you so much for your response.
I am taking nutrizym 22, also I take omeprazole, buscopan, ferrous sulfate and multi vits and minerals. All my recent blood tests have been fine so I don’t think I can do anything dietary or supplementary to improve things.
My consultant has said I may need to look at the physical aspect of my job as I work in a warehouse so am on my feet all day without a lunch break. I just didn’t expect it to be an issue so soon! I have already given up a part time cleaning job and don’t do any overtime at work.I am 44 years old and I guess I am a bit worried about cutting my hours at this early stage. I have had a few random days off because of my fatigue and my boss is understanding. Nicki suggested maybe I could try a shorter working week for a few months to see how much difference it makes.
It is so nice to speak to other people in a similar situation as it can be hard to explain it to people.7 February 2018 at 1:31 am #56444
Hello again Tasha, well, you are being well looked after, that’s good. I have looked for those few words Lin wrote, they are good, and unfortunately I am at the age, when I put things ‘safe’ and can never find them again, but I will keep looking! Do you belong to one of the net natter groups? if not, then look to see if there is one near to you, they are brilliant, and it is also helps to find someone who lives near to you, I have many friends locally, and we support each other.
I would suggest the same as Nikie about working, if you are able. The foundation did a survey a few years ago, as to the degee of fatigue patients suffer, so, be assured, if that is the right thing to say! that it is a known fact, and you are certainly not alone. You do need to rest, push yourself when you can, that is the way I deal with it, but I am much older than you. Keep posting, and I will speak again soon, Carole.9 February 2018 at 7:34 pm #56461
I made it to Friday but it has been a bit of a struggle this week. This afternoon I definitely ran out of energy! Felt exhausted, dizzy and very off balance so sat down for last hour of work.
Am still considering cutting my hours but maybe just by finishing at 1pm on a Friday. My boyfriend lives with me and is hugely supportive and I know he thinks it would be a good idea. It’s so difficult making a decision though!
I went to a net natter group once but my nearest one is about an hours drive away and is usually held while I’m at work.
I am glad you have so much support close by. I joined this forum because sometimes you just need to talk to someone that truly understands☺9 February 2018 at 7:58 pm #56462
Hello Tasha, I think you will know your limitations, what you mustn’t do, is feel guilty, difficult I know, but this fatigue is certainly one of the side effects, and you must learn to rest when your body tells you to. Speak soon, Carole.9 February 2018 at 8:54 pm #56464
Good to have you as part of this group Tasha. I have found it very useful and helpful – the support groups are during work hours so I have also found it difficult to attend them. I did go to one but, to be frank, came away more worried than when I went in. Part of the problem is that our “NETs” are all different. Fatigue is a common problem though – I have found sometimes that it is tough but at other times all is fine.
Keep posting and we can all keep in touch.13 February 2018 at 3:53 pm #56476
My wife was diagnosed with midgut net in 2005 and the fatigue unfortunately has been part and parcel of the disease ever since. If you can manage to finish early early on a Friday afternoon then also maybe taking Monday off this would give you a good break to recharge your system. My wife eventually went onto a 3 day week and that helped her enormously so she could enjoy her time off work as well as being able to fulfill her job responsibilities.
Don’t forget you have had major surgery and it takes time to get over such a thing so don’t be hard on yourself. It sounds as though you have an understanding employer so its perhaps a good idea to ask if you can lessen your hours so you can at least gauge if it makes a difference to your life. Remember life is to be enjoyed not endured.
Deb my wife also had invasive surgery in 2011 and whilst the following months were hard and frustrating she has since led a full life, with the occasional down time, but she soon bounces back.
Deb has since finished work as I managed to take early retirement so no doubt this has helped her to manage the fatigue.
Dave13 February 2018 at 4:41 pm #56478
Thanks to all of you who have responded to my chat on fatigue.
Dave, it is good to hear that cutting down on work helped your wife feel better and enjoy a better quality of life as a result. I think I will speak to my boss about an early finish on a Friday, maybe try it for a couple of months and see how I feel.
I’m sure a few months down the line I will be glad I did it and wondering why it took me so long to make the decision!
I want to have some energy to do the nice things in life, not just for me but also for my boyfriend who is a huge support.
☺14 February 2018 at 10:24 pm #56480
Good to hear you are giving consideration to cutting your hours, I’m sure you will benefit enormously from the extra rest and relaxation. Your health and well being is all that matters so you go for it.
Dave19 February 2018 at 10:32 pm #56523
Hello everyone. I have just had my 8th Sandostatin L.A.R. injection,and my oncologists told me that I will be on it ‘for 10 to 15 years’!. All I want to do is sleep,if I sit down, I want to drift off. I found out last June that I had a N.E.T. and that it was in ‘various places in your abdomen’, not a nice thing to hear. Has anyone else on the same hormone injection every 4 weeks have different side effects?20 February 2018 at 1:44 am #56524
Hello Shinegirl, I could write a book!!! – what a positive oncologiist you have, 10 to 15 years, is very good, I hope that I will be on this for 10 to 15 years, but having said that, there are lots of other treatments available and of course, lots of exciting new things happening. I am very late now, and need some sleep, but `I will reply again – but yes, I have had this injection for a few years now, a friend of mine has been on them for over eight years, and yes, some get lots of side effects, some don’t get any, but tiredness/fatigue is the one that is most common, speak again soon, Carole.
20 February 2018 at 8:23 am #56526
- This reply was modified 3 months ago by dabber.
I am on sandostatin injections every 4 weeks too and have been told I may be on them for life.
I have been struggling a lot with tiredness and I also have many days when I feel dizzy or spaced out. I am unsure if this is as a result of the injection or the cancer but probably a combination of both.
I have been reassured that fatigue is very common and have had to reduce my hours at work. I try to think that these side effects are better than the alternative.
Take care20 February 2018 at 3:47 pm #56527
Deb my wife who has the monthly Lanreotide injections (and has done for the past 6.5 yrs) has suffered fatigue on and off for many years but when it started to get worse it turned out she was diagnosed diabetic. Apparently the monthly injections can screw up the pancreas which can mean the patient becomes diabetic. Just a thought
Dave20 February 2018 at 6:46 pm #56528
Your last message was very interesting as I was on lanreotide injections for about a year before they changed me to the sandostatin LAR injection. I got a lot of low blood sugar episodes which I kept a record of over a period of several months, they would happen about 3 times a week and my readings would be as low as 2.4.
My blood tests didn’t show I was diabetic but I was switched to the other injection to see if things improved. I still occasionally get low blood sugar but not as frequently as I did before.
It is so helpful to talk to fellow patients and their family as I think the consultants as amazing as they are don’t always prepare us very well for possible side effects.
Tash20 February 2018 at 11:35 pm #56530
I am also on Lanreotide and have had them for just over a year. Some months are fine and others not so good. At the moment I am a little dizzy so have my tin of “round tin sweeties” with me at work. I think we have to adapt as best we can and this list does illustrate different adapting techniques. Good to know we are not alone …..21 February 2018 at 8:05 am #56533
I agree we definitely have to adapt and accept a new “normal”
It can be hard to accept we can’t always do what we want to but we are lucky our team of specialists can treat our cancer.
The sweetie tin is a good idea, If I felt a dizzy spell coming on I would have an emergency latte and some chocolate!😊 My dietician told me milky drinks are great for helping keep weight on as I can’t eat large portions of food. Perfect excuse to drink lots of latte!21 February 2018 at 10:50 am #56536
Good morning Tasha, hope you feeling a bit better this morning. Yes, go with the new norm!!! Someone told me jelly babies were best, something to do with the gelatine, well, not sure about that, but they are rather nice, but a bit addictive. I get very lightheaded sometimes, but it doesn’t last, I have been told it is ok? well, ok then!! I know I was told that I may become a diabetic with my nets. but that was because they had removed two thirds of my pancreas, back in 2012, and fingers crossed, still ok, but borderline, but I do have the blood test for this every three months, it is called the A1C sometimes called the haemoglobin HbA1c. I had what they call the distal pancreatectomy, which is the body and tail, your Whipples operation takes away the head? A friend of mine had a Whipples about the same time as my operation and he is still not a diabetic, so, it seems we are all different. Shinegirl, I do hope this thread has been a help to you, as you can see, you are not alone. Carole.13 April 2018 at 8:24 am #57128
Hi, I had a small bowel resection 10 years ago (diagnosed carcinoid cancer), 2 and a half years ago a Gallium PET scan showed NET’s in mesenteric lymph nodes. been on Lanreotide 120mg every 4 weeks just over 2 years. On Monday went to my consultant for the results of scan done 2 months ago. Results where no development of NET’s. Consultant suggested I stop Lanreotide for 3 months “to see if my fatigue diminished. I am very surprised at this suggestion as the tiredness is something I cope with (4 or 5 days prior to injection and 2 0r 3 days after). I would not be having another CT scan until next year, so do not feel like accepting this 3 months off injections as we would not know the out come for a nearly a year…. any ideas/advice ? , Thanks .Rob13 April 2018 at 9:13 am #57129
I have sandostatin injections every 4 weeks following surgery to remove primary tumour from my pancreas and secondaries from my liver. I have since had 2 ablations on my liver to treat remaining disease and so far the scans show this was successful but my consultant has never mentioned giving me a break from the injections. I did change from lanreotide to a different injection about a year ago as it was affecting my blood sugar levels. I too suffer fatigue and cut my hours at work to help with this. I personally would prefer to stay on the injections as a precaution and deal with the fatigue. I think the fatigue is caused by a combination of the drug and the cancer itself so we probably can’t escape it completely. Obviously your consultant is the expert but I hope it helps talking to other patients.13 April 2018 at 9:28 am #57130
Thank you Tasha !, yes it does help, and I feel very fortunate that so far, I have had only one operation and the secondaries have not progressed in the last year, that is the way I want to keep it ! As far as experts are concerned I would prefer to think of it that it is my body I am the expert of, so stopping a successful treatment is not an option for me ….13 April 2018 at 9:43 am #57131
Good for you!
We know our own bodies better than anyone so we should be able to be involved as much as possible in these decisions.
My consultant has indicated I may be on my injections for life and I feel reassured by that.
Good luck with everything.13 April 2018 at 10:23 am #57133
Thank you Tasha, and best of luck to you X13 April 2018 at 3:07 pm #57134
I think most patients stay on their medication even though the fatigue is something they have to cope with on a daily basis. The injections are designed to be kept at a level to keep everything stable for as long as possible. At first only those who had the Carcinoid Syndrome were automatically placed on the monthly injections, then it was found that long term the injections worked well for others, keeping the tumours stable with little or no progression for many people. My husband has been stable now for 9 years despite having the syndrome and a liver so full of tumour that they couldn’t attempt to operate. He hasn’t had any other treatment at all. But the fatigue is one of symptoms of this disease and I’m not sure if stopping the injections would actually help much to alleviate that.
Obviously only my personal opinion but like you have already said, I would be very reluctant for Dave to stop having them. Another avenue for you to go down is to speak to one of the Net Patient Foundation nurses. The number is on the front page and they would certainly be able to give you some more expert advice.
Meanwhile, I wish you all the very best and perhaps you’ll come back on here some time and let us know how things are going.
Regards to all
Jenny13 April 2018 at 5:27 pm #57136
Hi Jenny, thank you so much for your comment and kind supportive words. I spoke to one of the Net nurses at the Net patient foundation this morning and she concurred with my feelings which are the same as what you have put down. I do hope your husband Dave keeps on top of things and keeps as well as possible. As I am more aware of the fatigue patterns, I try and adjust my life style to the injections/fatigue, and as there now seems to be a definite pattern know, what to expect.
Once again many thanks
All the best
Rob x13 April 2018 at 5:32 pm #57137
You’re welcome Rob and it’s true that once you know the pattern then you can arrange your life around it. I’m pleased you contacted the foundation and got their expert opinion too.
Look after yourself.
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