Saturday morning, day 4 after chemo and the CIPN is raging. Can hardly walk and my right arm feels dead. Barely type with one finger. No feeling in fingertips at all. On the plus side my ankles don't have as much pain as yesterday so far but I haven't been out of bed more than the time to spend a penny. My knees and right hip are painfull now though.
Just read that whey protein helps. Wondered if anyone has experience of this before hubby hits the shops.
I think that if it wasn't for the nerve thing then I would be fine. Worried it won't go.
Kryssy
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Kryssy
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Kryssy, that isn't right. A bit of tingling might be acceptable, but to have such difficulty isn't good. You should mention it to your medical team before your next dose. They can adjust it so that the side effects are less severe.
As for whey protein, I haven't read about that, but there definitely are some supplements that are thought to help. I'll have a think and see if I can remember them.
Finally joint/bone pain...my go to advice is Epsom salt 😊 (Seriously, I recommend it for EVERYTHING!). You need at least 2 big cupfuls in a bath and soak for at least 20mins. If you don't have a bath, even putting some in a bowl of warm water and putting your feet in the bowl will help.
I agree with Yosh you sound like you might be suffering more than you should and I would defo mention it to your team! Also the Epsom baths are amazing I had them regularly when I was having chemo and they really helped with achy bones and muscles!
No experience of whey protein. Do you have an emergency number? You should call and ask for advice rather than suffer. Your team should help that's why they are there
I agree with vicki, she's totally got this covered, you should speak with your team, I had (still have) neuropathy but not to the extremes you're experiencing. Im not aware of the benefits of whey on the nerves (there may be one) I do know athletes use it to help with muscle fatigue and it is a source of protein.
Good old fashioned Epsom salts are the answer to many things and you could quite well benefit from using them they certainly won't do any harm, I'm currently using them to try to head off an ingrowing toenail and they seem so be doing the trick.
There are drugs that can be given for the neuropathy, I choose not to take them as they can be soporific, however your reaction sounds really extreme so I think you possibly need something or your dose of chemo adjusting. Speak to the team.
Hi Kryssy, this is my first reply to you, although I have been reading all your posts. I would urge you to go back to your oncology team today, and tell them about this. You are having an extreme reaction and you need expert help, not self treatment. I know you are scared they will reduce your chemo and this might reduce its effectiveness, and I can remember having the same fears on my initial chemo. BUT the doctors are treating you as a whole person, and must rightly consider your overall health and quality of life in the longer term. How would you feel if you got through the cancer treatment and into remission but could never paint again, and were in constant pain? By assured there are many chemo options available, and switching drugs, reducing doses, or frequency of doses, are all regarded as tweaks which won't necessarily impact on the outcomes. I speak as someone who is on her fourth line of chemo in less than three years! Best wishes, Spes x
hi girls. thank you for your advice. typing is hard so scuse mistakes. hubby got me downstairs but it's difficult to move. can hold things sort of with left hand but right arm isn't well. shuffling along as though i am in a big ms attack. couldn't face all my breakfast and am so tired. hubby's gone shopping and i will ring my cancer support worker. hospital closed today. no-one works on saturdays over here except the shops and restaurants. if it gets any worse or doesn't get better hubby says he's taking me to a and e. i don't want to go as i don't like making a fuss but i suppose he's right. i will see onc 3 days before next treatment and will definitely tell him. am going to try sleep for a while now as i am exhausted. love to all of you and thank you for being there. xxxx ps have to find out what epsom salts is in french. x
Kryssy, I really hope you are feeling better today and that the hospital was able to help. Also hope you don't have to stay in for too long. This chemo business can be scary.
I looked up Epsom salt in French and have these suggestions: 'sulfate de magnesium' or 'sel d'Epsom.' I speak French, so both suggestions seem reasonable. If you struggle to find it in a normal shop, try a garden centre/garden supplies company. I buy pharmaceutical grade salts from a garden supplies company in 25kg tubs because I like it that much 🛀
Hi Kryssy, Totally agree with the Epsom salts they are very good & you should contact the Oncologist or whoever is in charge of your case over there because you should definitely not be as bad as you are & agree with what has been said about a reduction in the drugs administered. I still have tingling in my toes & I finished chemo March 2016 & sometimes it will remain so for a period of time but sometimes this will be permanent. I have learnt to live with this although if I wake during the night I do find it difficult to get back to sleep ,so now I wear socks sometimes in bed & I find this helps me.
I do hope that you get this sorted out & that you feel more comfortable in the near future. Take care, love Caledaxxx
Kryssy - you are doing the right thing by going to a and e. I too have suffered side effects and, like you, thought all would be ok and just laid in bed. My bowel had perforated and when I finally went in they said it had gone 3 days before.... The rest is history. The ladies on here are so supportive and have experience of this, I didnt, so it's definitely worth listening to them. I hope you are soon feeling much better - please keep us updated and let us know how you get on . Thinking of you x x x
Hi Kryssy sorry you are unwell. Think your hubby made the right call. I hope you are doing okay in hospital and that everything will be sorted for you. All the best
Hi girls. I'm still in hospital but got the Kindle so can reply at last. Your support and love has lifted my spirits so much. Thank you is not enough to say. I'm on morphine as nothing else touched the pain and just had Xrays as bowel is blocked. I've asked two doctors if this is permanent and if there is something to stop the damage but no definitive answers. Today I lost it as it felt as if my whole body was on fire. On constant anti nausea drip as morphine makes me sick and no food or drink. My right hand doesn't work anymore and the left is not much better but I can use it. No feeling in fingers or toes, except for the pins and needles. One doctor said the chemo will change or go to weekly but will not stop. Hubby is my rock but he is very concerned but trying not to show it. I just want to go home.
I hope no-one is suffering too much and keeping up the fight. I'll be back in the war as soon as I can.
Delighted to hear from you and hope you can get home soon. Are the bowel problems and the CIPN linked, or did it turn out you had two different problems? Thinking if you and your husband, it must.be especially difficult for you both given you've only just started treatment.
Bowel obstructions are really horrible. Many of us on here have had them, some several times. There are different ways of dealing with them, but generally they like to see if nature will deal with it by itself....with a few medical constraints.... before doing anything more radical.
I just had a thought about your neuropathy. In the states, it seems that very commonly L glutamine is given alongside chemo to help minimise the impact of this. I've done this and, in the nature of things, I can't tell whether things would have been worse or not if I hadn't!
Hi Mac. I read this too but chose the whey as hubby could get it straight away, although it is at home and I'm not. Because hubby can't speak French he had a piece of paper and tried all the supermarkets but couldn't see it. In the pharmacy they asked what was the problem and all he could say was, "ma femme cancer" and straight away they said, "you need whey" so it must be common here. Whey does not have glutamine so I'll get hubby to do a search. Thank you for the heads up xx
Hi Kryssy It was so hard to read about the pain you are going through I hope it will be sorted out and you are home soon. yes do keep up the fight I'm sure you will.. best wishes Lorraine💙💙
Hi Lorraine and thank you for your kind message. Just been told that I can go home tomorrow. Neuropathy still in hands and ankles but I can work at that hopefully. Not being able to use my right hand is such a worry but my left is learning new skills every day. Managed to walk twice the distance today without holding on to the safety rail. Progress, progress. I am a Sagittarius. Always positive and cheerful. Even my nightshirt says, "Life is beautiful", and it is. Love and happiness to you too xxx
Kryssy - good to hear from you and to see that they are looking after you. Hope you are feeling much better tomorrow. I was told that you can have side effects at the beginning but that they can amend your dose and get you back on track. keep us all updated with your progress x x Di
Hi Kryssy, I agree with the other ladies you need to talk to your team you should not be suffering like you are.
As for the Whey protein drink I've been having it now for over a year in almond milk as a meal replacement as my appetite is not the best, the only other supplement I take is magnesium tables as my oncologist suggested it could help with my bone and muscle pain.
I hope you get this all sorted out very soon best wishes Lorraine xx
Hi girls. Feeling more human today. Morphine took away the pain but still have dead hands and pins and needles. Yesterday I was all tears, snot and dribble. Nurses say I look better. Understatement. Waiting for doc to see my tummy xray before they can help me poo. Don't even think about the cancer anymore. Just want my hands back to normal. Scalp is itchy all the time so guess hair ready to fall out. Happy days ay? Love to you all. Kryssy xxx
Hi Kryssy, sometimes it's good to have a bloody good cry. I am glad you feel more human today. Let hope you start getting over this soon & can go home. It's nothing like being in your own bed. Take care Cindyxx
Hope you're feeling more human.... Just a passing thought but what are your magnesium levels like? Itchy scalp and hair loss for me is associated with low levels and hands, legs and feet pain give the game away too.
I don't remember feeling anything with chemo-related hair loss, except a spider's web effect, and I'd have thought it was probably a bit early for this to be happening....
Hi Mac. I don't know what my magnesium level is now but it wasn't on my pre-chemo test but is there for my next pre-chemo in a week's time. When the vampire comes for his daily fix this morning - four vials worth - I'll ask if they are testing for magnesium and see if I get an answer which is more than, "Je ne sais pas". Hubby has sent for Glutamine, after your kind recommendation, and should arrive early next week. If my onc comes to visit again I'll ask what he thinks and whether he will prescribe some. We are finding this cancer lark a tad expensive on our pensions.
I'm very much for nature's way without being silly about conventional medicine and I think you may have the same attitude.
When I was hospitalised for a bowel obstruction ( 3 weeks ) they did end up supplementing me for magnesium. I'd never taken any interest in this until 6 months later, being on a trial, the nurse called me in for a magnesium transfusion. Only at that point did I call up all my blood results and see that it had been below normal range for at least the last 6 months. Hence my cramping and hair loss....nothing to do with treatment, though the magnesium depletion probably was. I now watch my bloods like a hawk as the medics tend to get a bit single focus in my experience.
Thanks Mac. Does the neuropathy affect your lips? Mine have been tingling for the last few days and today they feel as if they are swollen, but they are not. I want to get my hands back, not lose something else. Tried to knit yesterday. Had to give up. Will try again later. xx
Just thought. I'm not allowed tap water, only bottled and it's high ish in magnesium. Do you think they noticed already. They don t tell us patients much.
Tingling vaguely rings a bell, but I don't associate it with neuropathy. As to the French and bottled water fetichism, don't get me started! Have they not read the research? And what about the environment? Bring back glass and deposits I say. If you're having it, a good idea to have one higher in magnesium I guess. x
Ha ha re water but I do live in a higher than normal radiation area due to an old plutonium processing plant that contaminated the rivers. But, we also have a higher than average life expectancy, but glow in the dark. In the French defence, they are very big on recycling and every village has recycling stations. None of this different coloured dustbin malarkey. Our tap water at home comes from somewhere up north but is a bit earthy. We drink it and bottled with high calcium for hubby as he got algodistrophy (spelling) after surgery and after treatment was advised to take more calcium. Personally, I would prefer a nice drop of Jameson or a glass or three of wine. X
I hope today brings answers and you start to feel better...
I have not mastered the chemo/poop thing once yet and am hoping for round 6 this week! (Just out of hospital so it was cancelled last week) Seems to be one way or the other..... 😳.
Hi Krissy. Glad to now that you are being looked after but sorry that you're having such a hard time. Think you might find the nurses a bit indigestible! 😁 Seriously though, hope they sort you out soon. Love and positive vibes coming your way from the UK. Jo 🌼🌻🌺🌹🌸🌷
More love and positive vibes coming to you from the UK. I also swear by EpsomSalts which I buy in bulk. Two full tumblers in a hot bath and make sure it's dissolved before getting in by swishing the water around until you can't feel any particles. Relax in it for at least 20 mins although I do more, sometimes abt 40 mins as I love my bath. Good luck and best wishes from GB.
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