Starting chemotherapy soon

What can people expect from chemotherapy? What helped you or a loved one manage nausea, tiredness, pain?

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Well this is a bit of a hard one to answer as everyone is different and you never know how each individual will react to the chemo. You can get any number of side effects so its best to deal with them as they arise, your medial team will be experts at dealing with whatever happens and as long as you communicate well with them they will help. Obviously nausea and sickness is a common one and I suffered but my team tried several different medications until they found one that worked… you don’t need to suffer, something will work. The same goes for pain, mine took a bit of controlling but the Doctors didn’t give up until I was comfortable. Sepsis is something they were very aware of in my case and they monitor you closely because the chemotherapy and leukaemia knocked my immunity to zero… again they informed me what to look for and I was in good hands… its one of the reasons why you stay in hospital for the duration of treatment.
Food wise I just ate whatever I fancied and my family would dash out and get whatever it was, think it helped them feel like they were doing something helpful! Ham, egg and chips was one thing I ate a lot! It is still something we joke about. My family brought whatever food I wanted into the hospital for me which the nurses were fine about as they needed me to eat! I didn’t like Strong tastes and my mouth was really sensitive, even a lemonade ice lolly hurt my mouth one time!
I could add a lot more and am happy to but if anyone had any particular questions please ask and I will see if my experience means I can help

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My consultant managed my nausea well with medication, but I did have a lot of ginger (tea, stem or crystallised) if feeling nauseous, and pineapple to keep my mouth tasting fresh. I think when having chemo you have the best excuse for eating whatever takes your fancy as sometimes you just don’t feel like food, but do try to eat as healthily as possible, using more spices and flavourings as tastebuds are often affected

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@AnnaMam and @Pisces56,

Did some foods put you off during and after chemotherapy?

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My mother in law is 83 years old and her chemotherapy side effects have been tiredness and loss of appetite. I am 49 and had to be admitted to hospital as I developed vomiting and atrial fibrillation…so I think each person has a very different experience. I had 7 days of severe chills and lethargy but in the last 4 days I have felt fine. My mouth felt strange and I ate bland food. I had medication to control acid reflux and potential constipation. One down and five to go !

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Hi, we really are wonderful complex, individual beings aren’t we. I also wonder, as I also have various conditions, like osteoporosis, irregular heart beat, kidney disease, ongoing shingles, constipation, acid reflux, fatigue, frequent infections, I am not getting any younger and, of course, chronic lymphocytic leukaemia. I am on medication for most of these conditions and I wonder what effect the medications have on each other as well. How is the one down and five to go going?

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Thanks Erica

So chemotherapy was yesterday I had some anti sickness drugs at home first . My body tolerated 50% of the drug and next time i am having chemotherapy split over 2 days. My heart rate was ok but wouldn’t tolerate a higher infusion. I am delighted that I am home and not in A&E , so today is a rest day. Thank you for your email, 2/6 only 4 to go, Katherine

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Hi Katherine, I am really glad you are having a rest day, let us know how the other 4 go.

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Hello @wabbly,

Thank you so much for sharing your experience with chemo with the forum. I am delighted to hear that you were able to go home instead of being in A&E. You mentioned that you have 4 more to go. Have you had many chemo since then and how are you feeling?

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Hello Joshua, I have done the 6 R-CHOP treatments I finished last week. I had a bad reaction as my heart went into atrial fibulation and had to have 2 days of chemo every 3 weeks. I am struggling a bit though. I am very tired and am SO fed up of smelling of chemicals. I am trying to cope by putting Vicks up my nose, changing my pyjama’s and bed linen daily and showering often. My mouth tastes liked old pennies , this is also beginning to get me down. I have no idea how long these side effects will last. So I have decided to take it all one day at a time… its tough though. My PET scan is in April.

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Hi @wabbly I came across your post and wanted to see how you’re doing? It’s totally understandable that all of that was getting you down! It sounds so difficult. May I ask how you’re getting on? Alice

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Hello, thank you for your email message. I am taking all a day at a time. I asked for a CT scan in July as I have a strange sensation when I swallow and this was how my non Hodgkin’s lymphoma started in July 2018 ; as a feeling of something being stuck in my throat. I am waiting for the CT results. I have appointments in August to test my heart as it may have been damaged by the chemotherapy . My cancer nurse thinks I may need counselling. I think it’s because I had an unrealistic expectation that post chemotherapy my life would go back to how it was. I am four months post chemotherapy. I think I am in denial. I haven’t worked out what my new normal will look like yet but that doesn’t actually matter. I am going to sit back and let the world turn around for a bit. My heartfelt wishes go out to everyone having treatment, keep going I am rooting for you all.

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Hi, it sounds as if you are going through a tough, anxious, scary time. Awaiting tests and test results really raises my anxiety levels and my imagination runs riot. Also the million dollar question, ‘what will the new normal be and feel like?’ Perhaps there is no answer and it will evolve over time. All I would say is that in my experience 4 months would be a very short time for my body to ‘repair’ itself physically and emotionally, especially after it had gone through what yours has. Emotionally my emotions were on high alert for an awful lot longer and physically my batteries were depleted for ages too. I also found I felt under pressure from family and friends to be ‘cured’ and for ‘normal services to be resumed’. I had to tell them really how I was and how I was feeling although some would still say ‘oh, you are looking well’. I did find some fresh air, interacting with others and suitable exercise did actually help me and stop my mind being in overdrive a wee bit. The Bloodwise support line is free from UK landlines and mobile phones on 0808 2080 888 and they are available to take your call Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm, but you can get in touch whenever you want and leave a message and they say they will get back to you within one working day if you need it. Please be kind to yourself and keep posting how you are.

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Hi Katherine, thank you for sharing so openly and honestly. I’m sorry to hear of the tough time you’re going through, I hope you don’t have too long to wait for your CT results. I can imagine its worrying, especially if the sensation you felt when swallowing was how your NHL started. We’re all thinking of you. Do you think counselling is something that may be helpful? As Erica said, our support services are here if you ever simply wish to talk. All the best.

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Hi Katherine. Having gone through several relapses from HL I can understand your anxiety, and maybe counselling will help, although it isn’t for everyone. I also expected that once treatment was over I would be back to normal, but I wrote a blog once about finding my new normal. I did find a new normal, but now 10 years post SCT I am realising that my new normal is having to undergo a further seismic change.
I have heart problems, as I had to have a repair when my tumour was found, and with chemo and RT it took some punishment. I hope all tests reveal what needs to be revealed so that you can get the best treatment. Be kind to yourself. Best wishes, Louise xx

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Hi Louise

Thank you for your kind words. I am booked in for heart tests in August, another ECG and a 24 hour test. I didn’t understand that the treatment needed to kill the tumour could damage your heart. I feel a bit nieve now but at the time I think I wanted to have immediate treatment. Yes I will have to see what these tests reveal whilst accepting that I can’t go back into my old life. My friend said yesterday that my ‘new’ normal will reveal itself when I am ready for it. I can’t work out if she is a wierdo or whether she has a good understanding of how life works !! Best wishes to you , Katherine

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My case is that my tumour was the size of a flattened football by the time I was diagnosed and was pressing on my heart so that the outer lining (pericardium) needed a repair, and I also lost part of a lung, a bit different to most HL patients. After a day in A&E 3 yrs ago the cardiologist gave me a copy of my normal ECG, which is a bit different :blush: I am on medication for heart problems now

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Hi Louise. Woah … you have been through the mill . I am sending you my best wishes and lots of strength xx

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