Breast Cancer Care Forum

Hi Woodlandmanor   Many thanks for your reply. I live in Skechers, I have five different pairs including a pair of winter boots that I alternate between. Unfortunately they don't seem to help much for me. The thought of wearing anything without a cushioned sole is unbearable. I haven't tried the cashmere socks though!   I have a cream called Dermacool from my GP. It's basically acqueous cream with menthol. It provides great short term relief for my symptoms.   Think this is something I'm just going to have to learn to live with.   Thanks for your advice.   Best Wishes   H.x ... View more

Hi   Not sure if anyone if still following this post? Just an update. Blood tests came back with very low Vitamin B12, Folate deficiency and low Vitamin D (I live in Scotland!). I was pleased that the diabetes and thyroid came back normal but was actually quite pleased when my onc told me that I had a vitamin B12 deficiency as it meant that there was something to treat. He said that my neuropathy had most likely been caused by chemo but could have been exacerbated by the B12 deficiency.   I had the loading dose of 5 vitamin B12 injections within 2 weeks and have been taking vitamin D3 and folic acid orally daily. I was really hoping that my red painful feet and fingers would improve after the B12 injections but sadly they are not one bit better and I had my last one on the 7th December,   See oncologist again in February but it's looking like I'm going to be stuck with this.   Jay68, how are you doing?   Best Wishes   Haz x ... View more

Hi Jotomo   I'm not on here much anymore but I wanted to reply to your post.   I'm by no means a medical person but it sound very much like you have an infection? This happened to my neighbour recently and she required antibiotics after contacting her BCN who arranged for her to see her surgeon. This was all arranged within two days when she described her symptoms to her BCN over the phone. It's all cleared up now.   Have you seen anyone about this yet?   Best Wishes   Haz ... View more

Evening Ladies,   Firstly, thank you for your replies and sharing your experiences.   I have seen my oncologist who said he doesn't think it is palmer plantar syndrome/hand foot syndrome but probably neuropathy. However, he has ordered more bloods which include checking sugar levels (diabetes), thryoid function, vitamin D, B6 & B12 deficiency and ESR (which I think is some kind of inflamatory marker?) to rule out any other possible causes. He has also referred me to the hospital's occupational therapy department where they deal with long term chemo induced neuropathy.   Things haven't improved regarding my feet and hands and I've also got some digestive problems which I have been getting on and off for the past six months. It's a feeling of being bloated/full and an indigestion like pain in my chest. It's all starting to get me down to be honest.   I see my onc again on the 14th November so will update again then, in the meantime I hope your own symptoms are improving.   Best wishes   H.x ... View more

Hi   I had 18 herceptin treatments starting june/july 2016 to September 2017. I started off getting mugga heart scans, my lvf dropped around my 6th herceptin. Referred to cardiology, was borderline for heart tablets but was reluctant as I'm on many other meds. Herceptin suspended for around 8 weeks, changed to echo scans and lvf increased just by having a break from the Herceptin. Had echo scans after every 3rd or 4th herceptin at my request and managed to complete all 18. Had to change from injection to IV as I developed a reaction on both thighs but it wasn't a problem and overall time spent at hospital was actually quicker on IV. I just took them one at a time, after each one I thought "Well, that's another one under my belt". Oncologists words were "No point in curing you of cancer then killing you with a heart attack". He also said that "18 was just a figure plucked out of the air". He is held in very high esteem in his field and I trust him completely. He is also involved in a lot of research/lab work and when I asked him about the Persephone trial which trialled 9 versus 18 herceptin treatments (the results are now out, mentioned in a thread further down) he said "there was not much in it in his opinion". He was correct, although further research is still to be done the results so far are that the benefits of having 18 over 9 are less than one per cent.   Good luck with the rest of your treatment. ... View more

Aine - Delighted to share bowel habits with you! I finished chemo in September, had rads in October last year. So, 7 months on from chemo I expected more improvement with regard to the neuropathy. I'm hoping for some improvement after the herceptin is finished but I'm not overally optimistic to be honest. Hope you're not too tired today after your painting. I'm planning to gut the house tomorrow but I think I'll limit it to 2 hours max, problem is I tend to do housework less often then really gut it when I do it, to the point of sweating etc. Also, once I start I find it hard to stop. I must be strict with myself though, 2 hours it definitely is Oh, I've had 13 herceptin so far.   Running Free - Well done on running 5K! Good for you. I'm sick of explaining herceptin to people full stop! As far as everyone is concerned my active treatment is well behind me and I should be back to normal now. I give up, mostly I just smile (grimace) and say "Yeah, I'm fine thanks".   Blueash, you seem to be getting off lightly with the herceptin side effects, lucky you.   Take care everyone. xx ... View more

Hi Theresa   The Emla numbing cream should help, just make sure it's been on for around 15 mins before injection. You can actually buy it Boots, you have to ask for it. It's about £3? for a small tube but you don't need much, problem with applying it before you go to hospital is knowing where exactly on your thigh they are going to inject so maybe best let them do it.   As Jaydubz said, some sting more than others and I personally think it depends on the nurse who is administering it and also how quickly it is given, you don't want it too fast. Unfortunately it is a "nippy" jag.   Good luck with Emla cream.   xx ... View more

Hi everyone,   Aine - I'm so glad you posted this although I'm sorry to hear that you had a rough week and are suffering side effects. I'm feeling bloody awful today and it's my own fault. I've done far too much this week, particularly on Wednesday and even more so yesterday and I am paying the price big time today and will probably do so for the next few days. Like you, I also have an iffy stomach and have diarrhoea most mornings and up too 2 or 3 times a day. I'm sick to the back teeth of my numb fingers and toes and to be honest I've resigned myself to the fact that they will probably never recover from the chemo damage. As for your ESA, I would definitely recommend getting the help of Macmillan, you have probably sent the form away by now and I don't want to dishearten you but by the sounds of your "help" from you GP, it may well be unsuccessful. However, many are and then are successful after appeal. I strongly recommend using Macmillan if this is the case, they have a dedicated benefits team, I'm sure there will be one near you, if not it's worth travelling as they are very experienced in this field. Have you also though about applying for PIP? Again, please do not fill out the form without any help as it is likely to be unsuccessful without the help of a specialised organisation such as Macmillan. I have not used Macmillan as prior to my cancer diagnosis I was already receiving ESA and DLA for my mental health conditions but I have heard great things about them. They have a dedicated benefits team in my local cancer hospital.   Running Free - Congratulations on finishing your herceptin! A huge thanks for your post and for giving us hope that the side effects will start to disappear soon after we finish. I really needed to hear that right now. Hope you continue to improve as the weeks go by.   OAD - I completely agree with you regarding the downplaying of herceptin side effects and I am finding that they are cumulative. I was speaking to a woman in my Moving Forward course only yesterday who has had 17 herceptin and she was saying exactly the same thing. I too have learned the hard way and from now on will learn from this and will listen to by body and learn to pace myself. I was warned to pace myself but I'm impatient and not very good at following rules so it's my own fault but lesson learned!   Best wishes to you all and please keep in touch.   Love Hazel. xx ... View more

Hi OAD Hope you're well. How many herceptin treatments have you had now again? I had my 13th yesterday. I am attending a Moving Forward course and last week we had someone from Macmillan come to tell us about their Move More programme in Glasgow. I think I might have mentioned this before but there is a collaboration between Macmillan, NHS and my local council for people who have been diagnosed with cancer. My memory fails me (yet again) but I think it's called the Cancer Journey, it's about not facing cancer alone. They run gentle exercise classes, organised walks etc. run by specialist people who are trained to help people with cancer start exercising again. They have a class near me so I'm going to enquire this week and sign up. I am really suffering quite badly from fatigue at the moment and it seems the more I try and walk or exercise the worse I feel. :-/ I said this to the Macmillan nurse and she said I could be doing too much at a time, so I definitely agree with you on listening to your body in terms of how much exercise you do. I will be 49 next month, so was 47 when diagnosed. My periods stopped during chemo which finished in September 2016 and (fingers crossed) my periods have not yet returned. I'm not on hormone therapy either. I'm getting a lot of hot flushes which I assumed was due to the menopause but it could be the herceptin. Take care Hazel.x ... View more

Hi Linda Sorry to hear that you're in so much pain, that sound truly awful. I'm not on any hormone treatment as I tested negative for ER. I certainly have some joint pain on the herceptin but nothing like what you are describing. Could it perhaps be the hormone treatment that is causing the pain? Have you checked out any of the posts from the women on various hormone treatments to see if any of them are experiencing the same level of pain? I would speak to the nurses tomorrow at your herceptin appointment and explain just how bad things are. It's getting a balance of treatment versus quality of life. You've had 10 herceptin which might be enough?? I'm not a medical professional but it sound like it could be the hormone treatment that's causing your pain?? Good luck Hazel.x ... View more

Hi all,   OAD, Heart scan seemed ok, I'm due herceptin number 13 this Friday so I'll find out before then if anything is amiss. My big toe is still sore but I don't think it's infected. See podiatrist on the 16th May. I'm very sensitive to meds, I have a bad stomach, acid reflux and IBS anyway so antibiotics are not very kind to my stomach, some are better than others. They also seem to "interfere" with my antidepressants, regardless of what antibiotic or antidepressant I am on at the time? How's your back? Mine's still a bit sore. How many herceptin have you had now? I've got my first mammogram and appointment with surgeon on Tuesday morning, I'm a bit nervous. The Moving Forward course is good, nice to meet up with people in the same situation Next week's topics are chemo brain and fatigue. They asked if anyone was interested in attending a Fear of Recurrence course so I've signed up for that in July. Got my hair dyed platinum blonde! Lol! I've always wanted to be that colour but my dark, dry, frizzy hair could never have stood the bleaching process, it's pretty knackered now, even though it's short. I've not quite got the trendy pixie cut I was hoping for but hey ho, it's hair. Really tempted to dye it pastel pink or purple. Think it's because I'll be 49 next month, must be having a mid life crisis (again!)   Take care. xx   Aine, I've started to walk a bit more, even with my sore toe. My legs were a bit sore last night so I must have walked briskly and long enough to do some good. Cut the grass today, took a break halfway through, it's a medium-large size lawn. I used to take my dog to the cemetery too, it's a 2 min walk from my house and I used to take her to the really old part where I could safely let her off the lead for a good run, she was a greyhound.   Best Wishes   Hazel.x ... View more

Hi Aine Sorry for the late reply. Thanks for your good wishes. My back is much better. My bad back is due to working with horses for years, back breaking stuff. Strangely enough, I have just got a new car yesterday and noticed how much more comfortable the seat is. It's a Ford Focus to replace my 12 year Vauxhall Astra but it has lumber support sports seats and is much more comfortable. Sadly though, I think the all these years of mucking out, lifting horses feet, bales of hay and heavy feedbags etc. have done permanent damage to my back. I had my 12th herceptin treatment, still by infusion last Friday. SE's not too bad. Got my echo heart scan next Tuesday. My fingernails are not too bad, still got the neuropathy though, but my toenails are awful, especially my big toes, all yellow and discoloured, they look like an old man's! GP thinks I have ingrowing toenail so in addition to seeing the podiatrist at my local cancer charity, I also have an appointment to see one on the NHS for a second opinion. Infection in toe has cleared despite having to stop my antibiotics early due to severe upset stomach. It's still a bit sore though but nothing like it was. I'm glad you're enjoying the Fatigue workshop. I went to my first Moving Forward course this morning. We had a talk from a Breast Cancer care nurse and a talk from a nutritionist. It was good to meet up with other women in the same situation although obviously not everyone's treatment plan was the same. There was about 10-12 of us and two of the other women are also on herceptin. I'm looking forward to the other three sessions. At some point someone from Macmillan's "Move More" is coming to talk to us about exercise. In Glasgow, Macmillan have teamed up with the NHS to offer different exercise classes, free gym membership, walking groups etc for people who are recovering from cancer. There is also a Pink Ribbon Walk in Glasgow on 17th June, 5, 10 or 20 miles but I don't think I could even manage the 5 miles, maybe next year. My plan is to build up my exercise and take short breaks like yourself. That's what we were talking about at the course today, just do a little at a time and don't be too hard on yourself. Take care Hazel.x ... View more

Hi Aine,   Eh, exercising not going too well. BUT, I do have a really good excuse at the moment as I have a rather painful "whitlow" on my big toe AND I've also got a sore back so walking at all is rather painful just now. I saw GP today and have an antibiotic cream and a good old fashioned poultic to try before a course of antibiotics.   I'm due my 12th herceptin on Friday so will check with the nurses tomorrow that it's still ok to have it with this whitlow.   Great to hear you're getting out and about walking in the countryside. There is no doubt it is beneficial, as long as you don't overdo it. Don't think there's much of chance of me overdoing it mind you, even when my toe and back are better. Small baby steps for me. I actually had a plan to set my phone time for 5 mins medium pace, 5 mins fast pace, then 5 mins medium pace again. I just need to put my plan into action and build it up!   Hope everything goes ok tomorrow? with your herceptin.   Best Wishes   Hazel.xx ... View more