I'm helping out with a teaching session on Ovarian Cancer at the British School of Osteopathy on 9th February and have been asked to present the patient experience.
I'm aware from reading material posted here on this community that we have diverse pains, problems with swelling, neuropathy, feelings of poor health, etc so I realise my own experience is limited and it would be good to collect the experiences of many women and share these with the osteopath who is preparing the session.
The Cancer Research website lists how osteopathy may help certain symptoms:
Improve circulation
Reduce swelling
Ease or control pain
Help restore movement
Ease tension
Improve feeling of wellbeing
Would anyone be willing to help by giving me a little overview of pain experienced, neuropathy, tension or general feeling of poor health? The anonymised information I gather will be shared with the teaching osteopath in order to prepare for the session. There's a bit of background material on osteopathy on Cancer Research UK website: cancerresearchuk.org/cancer...
I'd be really grateful for any feedback by 31 January either on this thread or via PM and when the speakers' notes become available from the training day I'd be very happy to share them with you.
Thanks so much. Annie
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A problem I have leftover from paclitaxel chemotherapy treatment last July is neuropathy in my feet. The balls of my feet feel like blocks and I have a strange feeling like I have stubbed all my toes. In the grand scheme of things it is unimportant as fortunately I can walk/exercise ok. I have had reflexology and massage therapy (at the Royal Marsden) whilst on treatment which I found very helpful.
Dear Sharon, This is really helpful, and particularly the detail about the chemotherapy prescription that caused the neuropathy. I'm drawing up a table to give to the osteopath so if she has any further questions will get back to you via PM. Thanks so much!
Also just to say that I only had two rounds of Taxol/Carboplatin back in 2010 and had to come off it because of severe neuropathy in my fingers, feet, stomach and bust (Six months prior to starting that round of chemo I had had a prophylactic double mastectomy and reconstruction using my tummy tissue so the nerve endings in that area were also effected,) After changing to Caelyx/Carboplatin the symptoms receeded and eventually went altogether. When I was back on Taxol last year I only managed 8 weekly sessions (intended to have18) - having to come off it because of increasing neuropathy in my fingers and feet. The fingers are now ok but the foot neuropathy has remained.
It's interesting to me personally you had neuropathy in the stomach. I asked when I last came for chemo whether it was expected to have neuropathy in the torso front and back and my CNS nuse said I was the first ever. It's gone a bit today as I've had a week's chemo break but more tomorrow so let's see if the neuropathy comes back.
I've been a bit worried about it wondering what's causing it if it's not the chemotherapy. You've put my mind at rest that at least one other person has had the same.
I went to see an osteopath who I have been going to sporadically over the last twenty five years (approx) after I'd had my op. I had problems with my lower spine and he said it was a sacroiliac problem. He did some massage and some manipulation of my leg, where there was a sciatic kind of pain. I went approx weekly for about eight weeks and it was very much more comfortable after the appointments but over the months, not much different. I was also referred to the hospital back pain clinic, which I attended ... Comprising an X-Ray, a course of talks and six sessions in the gym, which again helped in the immediate days after but not overall, long term. I carried on going to a gym privately but it didn't seem to make much difference. I could walk. I fact walking eased the pain. I couldn't stand still without being in pain, so I had to seek out chairs whenever I wasn't moving around. I don't think the osteopathy helped, other than the immediate effects of the massage. I don't know if the gym helped. I know the walking helped. I have been doing tai chi for five years and that is the thing that has helped the most. I can stand for much longer periods of time now, I walk over ten miles on occasions, and I am mostly pain free.
I don't know if this is of any use to you Annie......not a miracle cure, at all! If it is of use, you're welcome to use it.
Hope things go well with this latest project, and that your chemo is doing the job without too much discomfort and pain. Keep smiling
Dear Wendy, this is really very helpful indeed. As you'll see from my reply to Sharon, I'm compiling a table of all the responses to give to the osteopath and if she has additional questions will get back to you. The detail you've given is really good.
As you say, yet another project which is a great distraction.
I'm currently organising a Tea Party and Book Sale in my house for Ovarian Cancer Month. Hope the builders will be finished by then!! I think I've probably exhausted the generosity of friends and family so need to seek new pastures and have decided to advertise this event to my neighbours. I've had to enlist, or perhaps I should say press-gang, my daughters and 5 year-old grand-daughters as I've had to set the date for this event before knowing where I'll be in the chemo cycle. If I'm at a low ebb I'll just have to drape myself on the sofa, delegate responsibility, and let them get on with it. They'll probably make a better job of it without my interference. lol xxxx
I have had neuropathy symptoms since starting with carboplatin 4 years ago. I have permanently numb toes and the ball of my foot also is numb. Most evenings, from about 8.00 pm , I experience pain and alternate from freezing cold to burning hot from my knee down to my foot and some evenings the same thing from my elbow to my hands . Sometimes my thumb and fore finger are numb. The backs of my hands are very painful . I believe this latter is due to nerve damage when cannula is being inserted.. I can still walk - so long as I choose my shoes /boots with great care to provide good support . I have not tried any treatment for any of this
Thanks so much for all this detail. I didn't know that Carboplatin caused neuropathy and yours sounds pretty hard to cope with. The detail has been added to my table so if Abby wants any more info I'll get back to you if that's OK.
I'd better make sure to make notes of her talk and any feedback and post it up here just in case it's of help to anyone. I must admit even with 2 osteopaths in the family nobody has mentioned this being a therapy for ovarian cancer but there was a publication in a recent osteopathy journal and there's also information on Cancer Research UK website.
I have had pain off and on in my left arm and shoulder blade since chemo, seven cycles of carboplatin. Also have permanent pain in the left side base of my head since severe anaphylactic shock on second cycle of taxol, wasn't allowed to have it after that. Went to Velindre last week as I was concerned about all the pain being signs of recurrence, but was told that thankfully they believe it to be through the chemo and the taxol reaction, also have regular numbness in fingers, apart from that I'm great!!
Hope you are doing ok on your current regime and are feeling well.
Dear Kaz, thank you so much for sharing with me - and sharing with the osteopath Abby. Wouldn't it be wonderful if on sharing these side-effects the BSO comes up with some positive advice. We've got quite a long session for a presentation so I'm going to see whether the BSO would make it into a workshop session which would give us feedback from the floor before closing the session.
Will post up anything I glean from this.
I'm well on my carbo-platin, gemcitibane, avastin regime. Getting a bit tired but I've now had four out of six sessions and I'm sure the travelling and gadding round London that adds to that. Our Support Group meets this month on Wednesday 29 Jan.
Hi Annie, most of my symptoms/pain have fortunately been fairly minor and short lived but whilst on Avastin I did suffer quite badly with pain, stiffness and soreness around my collarbone, neck and shoulders. At the time I wasn't 100% sure whether it was tension, chemo after effects, Avastin or a combination of all three, but since stopping the Avastin the problem has completely resolved. I was able to have some acupuncture at the Marsden that appeared to help and several massages at a local cancer centre which also provided some relief if only temporarily.
Dear Lynne, Thanks so much for this. It's really helpful. From a personal point of view I was wondering about joint pain with Avastin as I've had sore arms. As you say it's difficult to know when you have loads of drugs exactly what is causing the problem. I'll add your report to my list. Thanks so much. xxx Annie
Hello, you one woman mission to change the world, you.
I had peripheral neuropathy which started after the very first carbo-taxol session and grew steadily to what the onc insisted was a medium level only. My feet were so. Umb I would trip over them, dared not drive as I couldn't feel the pedals. It started to ebb almost as soon as chemo ended (I noticed this during the break for the op). It grew immediately I restarted chemo for the second time, but slower - the second lot was cisplatin-taxol so I rationalise it was the taxol that affected me, primarily. However, some numbness remained after most of it had gone (about 3 Months).
Exactly one year on, after end of chemo, the residual numbness shows no sign of going. It is down the side of both big toes and a bit across the whole of he underside of the toe joints.
My second impact has been aching joints. Is happened after chemo ended and has progressively worsened. It started in my hands and hips, now I think every joint is aching and stiff most of the time. My hands and feet actively hurt, especially in the morning and evening.
Thanks so much for all the information Sue. I did chuckle you think I'm for changing the world. I wish! I think it's just I'm on the books of the three ovarian cancer charities so they tend to get in touch if they think there's something I can do.
You've prompted me to give volunteering a plug because charities can always do with more volunteers. I know you're on the books too but if anyone else wants to get involved just sign up to charity newsletter or make yourself known to them and they'll get in touch. I can't recommend it enough. The volunteering work I've done so far has been great fun and very varied. In fact it's a bit like being part of a big family.
The latest request came from Ovarian Cancer Action. They were looking for someone who would be prepared to give a talk on the patient experience to the British School of Osteopathy. As it happens my step-daughter is an ostepath and my son-in-law teaches at the London School of Osteopathy so were were able to offer a wrap-round service and it even ties in with Martin's birthday weekend when we'll be in London visiting his daughters.
I'm so grateful to everyone for their comments and will be posting any helpful feedback we get from the session.
Hi Sue, I just wanted to check this was all the first line of treatment. I hadn't realised you had two different types of chemo - but think both were part of the ICON 8 trial which where the chemo was inserted directly into the abdominal cavity?
Ah yes I seem to recall PETROC required optimal debulking so I guess women who were part of that and had surgery part-way through would have changed the regimen. Thanks for clarifying this Sue!
Hi Annie- I had Carboplatin and developed very achy ankles and feet which were much worse first thing in the morning and also in the evening. I've found that reflexology and (when I can persuade the lovely Yorkshireman) a really firm foot massage has helped. I finished chemo in May and have felt some improvements since October... Look forward to hearing how the day goes, best wishes Sx
Thanks S. I'm waiting for these osteopaths to return from their honeymoon to work out what they intend to do for the session but have recorded all the details kindly supplied by friends here and may well need to get back to all/some of you for more detail.
I have to say this volunteering malarkey has taken me to all sorts of places and offered all sorts of challenges I'd never have had before.
I had Cisplatin & Cyclophosamide first time around (1997) & only managed 5 out of 6 as it was affecting feet, knees & hands. Came back in 2007 & had Taxol & Carboplatin, again only managed 5 out of 6 but the effect on feet was really bad. Came back in 2012 but due to damage to bone marrow & platelets couldn't have chemo but was put on Letrozole, since then I have been attending a chiropractor as my hip has got bad & bones & muscles are achy & sore. He also does PNF stretching with me & I know a difference. Found someone locally who does the Dorn Method (German) & it is an excellent therapy for spinal/lower back conditions & he also does PNF stretching with me. Thai Foot Massage is also good for the feet as I am in the same boat as most of us that my feet are numb, some toes as well but at night I cannot sleep as it's like ants running up to the knees & back down again. Feet are burning hot so I have found that if & soak them in tepid water with salt, half an hour before bed it really helps.
This really is very helpful indeed so thank you for sharing it. I'm making up a list of symptoms to share with the osteopaths who are giving the main talk and will post up the feedback here. I'm really very grateful. xxx love Annie
Hi Annie - reminded that I didn't reply to you - and I've missed your deadline - by going to see my osteopath today!
I had mild neuropathy in one foot following carboplatin 3 years ago. It never really went away and was most noticeable getting into the bath - not painful or limiting really. My most recent chemo was carbotaxol and I had only 5 of the planned 6 doses because of the developing neuropathy, as well as the increasing severity of my reaction to the carbo. Numbness in both feet and uncertainty about temperature. Fingers too, though more diffuse. Occasional random shooting pains mainly in hands. During chemo, this was alleviated along with the more severe pain during the cycle, with massage and epsom salt baths. I came across some references to acupuncture for it but have currently mislaid them. Hope your session goes well and would be very interested to hear about it. xxxxx
I'm so grateful you dug out this blog and replied. It really isn't too late as I'm still collating emailed and posted feedback from members. Everything you have posted is really helpful.
Would you mind describing what you thought was wrong before a firm diagnosis was reached, and commenting on your general health and wellbeing prior to diagnosis - sorry these are additional questions the osteopath asked when I sent her the first batch of feedback.
I will post a report on the meeting and any notes after the weekend. I just hope it helps.
I'm assuming they mean before firm diagnosis of OC.....so, round one - I thought I'd sprained a muscle in lower abdomen lifting a suitcase onto a wardrobe (i.e. this was my first awareness of anything). It didn't go away and intermittently I was conscious of something which felt muscular which led me to the (excellent) GP who felt around and sent me off pronto for scans etc and the rest is history. Round 2 was rise in CA125 only. General state of health and wellbeing at time of both diagnoses was excellent - feeling I'd put BC behind me, and fortuituously taking my mum on active self - organised holiday both times while waiting for scan results ( not telling her!) and feeling fit and well. I thought TinaB's blog gave a very powerful evocation of that whole terrain of possibly misleading symptoms ( and the need to not miss opportunities). Might it be worth signposting them to it? If I've gone down a side road, put me right! And I have now found the refs for acupuncture and CIPD as my osteopath also does acupuncture. Glad you're keeping busy.... the Turner at Greenwich is worth a trip on a river bus if you ever have a gap. love Chris
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