I am new to this site and love it! This is my 3rd set of chemo now am on caelyx help me with the side effects please

I have a decent time aside from some nausea and tiredness for the first 3 day I also take Nausea meds and steroids for this period, and including a regime of supplements ie: miseltoe or iscador shots, lyposperic vitamin C, COQ10, Krill, Vit A, Vit E, IP6 with Inositol, acidpolphilus, inner leaf alovera, oncolyn, potasium, and on occation magnesium when needed, red clover, and milk thistle tincture....and senocot to help the bowels...and Chinese medicines from my natural path, coupled with all this I also do "alternate therapies" sono photo therapy, infra red sauna, ozone, lazer therapy, near infra red light therapy for the days I don't do the sauna, and some acupuncture! And fresh green juice daily... (but sometimes I slip) My problem is the side effects start to really hit me about day 4 and am bedridden day 5'6 and sometimes 7....why when most people seem to get over it in day's I just start digging my heals in and feel terrible, weak and unable to function, and terrible mouths sores of which they have give me a rinse mixture that seems to ease the pain. Is there something I'm doing or not doing that could help besides going for a walk a couple times a day! Your feed back would be greatly appreciated.

6 Replies

  • I noticed your post though I don't live in Ireland and I'm a member of the Ovacome site. I was diagnosed in Jan 2011 and from what I read on these sites there's nothing much you can do about side-effects. You're obviously interested in natural complimentary therapies and it must be very frustrating to be doing so much and feel so poorly. It's just some women get side effects and others less so - and I've even been told by women that they had really bad side effects during one line of chemotherapy but not during another even though the prescription was exactly the same.

    I saw a discussion on mouth sores and someone suggested a very mild saline solution is as good as any products bought over the counter. It's wretched isn't it. The main thing is don't beat yourself up if you're feeling poorly. Rest, or go for a walk or whatever you can do to distract yourself and think I've had one more session so that's one less to go.

    Good luck with your treatment. I take Iscador orally and I've had a long period without the need for chemotherapy so I'm not going to stop taking it!

    love Annie xx

  • Thanks Annie, yes I have a great interest in the mind healing the body and the addition of natural therapies. I am in Canada not Ireland either.... Tell me more about the Iscador tablets you take and where you get them from and do you know if it's a benifical as the injections?

    Thank you for your thoughts, but I think I'm past the salt water as an only solution to my mouth problems, my tounge swells so much and the sores are up to an inch plus in size, although I believe it helps along with cider vinegar rinses... I do take a combination rinse of steroids, anti fungal, antibiotic, and some sort of numbing med so I can eat when it's really sore.

    I am extremely pleased to hear you are doing so so well and wish you continued success.

  • There's another ovarian cancer group on HU called Ovacome. It's mostly UK members but there are members from Canada and the States.

    Iscador is one of the drugs listed by the British Medical Association that can be prescribed. However most GPs aren't trained homeopaths so I went to London to see a homeopath who specialises in oncology on the recommendation of a friend with ovarian cancer. She prescribed Iscador from the Apple Tree and said there was no scientific evidence to say drops were any less effective than administered intravenously. Here I would have to pay for the sharps so it's easier to get the drops on prescription which is free-of-charge. I take 12 in the morning and 8 at night from Monday through to Friday evening.

    I started taking Iscador when my CA125 count started rising 12 months after finishing chemotherapy. It has continued to rise very slowly but I have no symptoms. I've been taking it now since December. It is associated with 6 months additional remission so it might be that which has given me these additional 10 months without the need of more chemotherapy. If I had to buy it over the counter it would cost £80 per bottle and a bottle lasts approximately 3 months. The consultation in Harley St cost £250 and I think the investment was well worth it. Apparently I should go back to the homeopath as she will change the prescription when I start chemotherapy to make the side-effects more bearable.

    My hospital in London doesn't prescribe Iscador as a standard part of the treatment but going via the GP has given me access to it. Some hospitals in the UK are treating it as part of the overall plan.

    Hope this is helpful - and that you're more comfortable very soon. xx love annie

  • Hi, I was on Caelyx for 4 months and found it very difficult to take. I didn't have mouth sores but I was unable to get food down to my stomach and literally could only eat 1 or 2 mouthfuls for any one meal.During that time if I ate one mouthful too much I could spend 6 hours dry retching. I lost almost 30 lbs during that time and felt totally lethargic for the duration! energy levels were very low which I think is normal for Caelyx.

    Final straw was after ct scan to find out that it hadn't worked to shrink the cancer (my first recurrence of oc) so, all in all my expeeience with caelyx was a total disaster. This doesn't help you find a solution for your side effects! I am on weekly taxol since and although I havnt had a scan yet I am feeling much better so hopefully this is working.!

    I do think saline solution is as good as anything for the mouth. how about natural greek style yoghurt?

    Best of luck and stay in touch.

  • Thanks for replying to me, it's so nice to have people that have been there to discuss these issues with. Your experience with Caelyx sounds awful, but the Taxol is going good, who knows why one works for someone and not for another, I myself have 2 different allergic reactions to Taxol and Cisplatin...grrrr I needed to be so highly premedicated for days beforehand and during treatment but my thought was as long as I got it all in it was good! Thanks for the suggestion I will add the yogurt to my regime, all these wonderful things in a mouth that has taste buds that don't taste properly sometimes it's just plain gross, but onwards and upwards we do what we need to to get the job done and taking care of ourselves is number one.

    Take care..

  • Hi. Thanks for response on facial hair, I know some will think it is a vanity issue, but felt it was such a minor one, it was a sutiable issue to raise with my oncologist. I use a mouthwash, KIN, and have not suffered from a sore mouth. In addition I use BIOTHENE for dry mouth - which I also think helps. But of course, each and every one of us have some different side effects that and ways of coping with them. I do believe that rest is important as is exercise, when we are able for it. I tell myself to accept the bad days and really enjoy the good days.

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