Back on Treatment

Well my visit to the onc for my scan result brought the news that i was kind of expecting , the pains i've been having in my back are the tumours growing again .. so im back on chemotherapy in about 3 weeks time .. only this time a different type TOPOTECAN (Hycamtin) I've to get it every day for 5 days every 2 weeks for 6 sessions .. and I will lose my hair again ... I can see another charity head shave coming on lol .. Has anyone been on this kind of chemo before would love to hear how they got on with it ...She says the reason i'm going on to this type is that the stats show that my type of cancer responds better to it then Carbo/Taxol so that kind of makes me wonder if this is the case why have i been through 2 full sessions of Carbo/Taxol and not this other one in the first place .... The travelling to Edinburgh every day will be a nightmare but its something that has to be done ....

27 Replies

  • Oncologist/doctors seem to work in their own ways with no deviation until they have to! Keep going Sharon you can do it! Xxx

  • Hi Sharon, or should I say buddie. I was also thinking about doing a sponsored head shave. Do I need special forms or do I just ask people to give money last time I lost my hair I just got my husband to shave my head at home, but if I can raise money for cancer research or Macmillan I will. I don't know which chemo I will be on yet as my appointment the the oncology doctor is not until the 7th November. My cancer is now in my lymph nodes. Last year when I had chemo I was on carbo/platin which made my hair fall out very quickly.

    It's good to share our thoughts and fears Love Babs x x

  • lol Hi Babs ...

    a lot of these charities have sponsor forms u can download online , so just decide who u want to do it for and download their form , i also set up a fundraising page online ( my distant friends could sponsor me too .. that was in Feb and i raised £1300 , so did really well ... .. It's also in my lymph nodes Babs something else we have in common ... its in my para-aortic lymph nodes in my back and that's where the pain is coming , the tumours are threatening to block of the tubes to my kidneys .. the last lot of chemo didn't shrink the tumours like they'd hoped so fingers crossed this lot does x

  • I have been having bad back ache for a while now but I kept putting it down to the fact I fractured my spine in June this year. Maybe mine is also in the lymph nodes In my back. I was just told last Friday that my cancer had returned and that it was in my lymph nodes. I will find out exactly where it is next week. Did you fill up with acites as I did. I had 6 litres drained off while I was in hospital last week.

    Love Babs x x

  • No thankfully i've not had that ... just the back pain but knew there was something wrong , I do have a bad back so often have back pain but this felt different .. x

  • Hi Babs

    Sorry to hear that it has come back. Hope you're feeling a bit more comfortable after the drainage and will be thinking of you next week.

    Love Mary xx

  • I thought my back ache was that but it turned out that the ligaments had loosened and was causing the vertebrae to trap nerves! I wiggle on a gym ball every morning and keep mobile! The relief was palpable but it took 3 months before I could move!

  • Hi Sharon

    I had course of Topotecan and never lost my hair. So hopefully this may be one side effect that you don't have to contend with!

    Good luck with treatment.

    Karen. X

  • oohh , thats strange as they said , i'd definitely lose it again ... mmm I better wait before i decided to do my head shave then ,Thanks Karen lol

  • About 40% will have complete hair loss, 20% will have thinning and the remainder will not lose their hair. This is according to cancer reasearch uk. Love Paul xx

  • Oh Sharon, I'm giggling at the thought of you shaving off all your hair and then finding that the regimen doesn't affect your hair! Can you ask about the Cold Cap? Does that work for Top as well as Taxol? I don't know the answer but your hospital should.

    It is a bit scarey them telling you Top is now better than Carbo-Taxol - but I think they go through a process because they don't really know when we start which one will suit us best.

    Thinking of you. We're lymph buddies, chemo buddies and travel buddies!!!!

    Love and hugs. xxx Annie

  • Wouldnt that be a hoot lmao but hey I really dont think it would bother me now .. lost it twice .. hair is just an accessory now lol not sure if they even use the cold cap up here .. never seen anyone use it all the time ive been there ... there is a leading t of people on here starting treatment .. must be catching lol xx

  • Sorry it is back Sharon, thinking of you and wishing you all the best love x G x

  • Wishing you all the best with your treatment.


    Zannah x

  • Best of luck with your treatment Sharon.

    Thinking of you.

    Love Mary xx

  • Sharon and Babs ,

    Sorry to hear that its back and wishing you both the best for chemo. Its a bugger ! Love dy x

  • Dearest Sharon and Bans

    I so hope that your treatments will go as well as possible and that you will both have long long remission as a result.

    Love and hugs

    Charlie xxxx

  • As Charlie says, I hope the treatments work, and I have read that other women found these treatments worked for them. It does seem a bit of a toss up, because any proposed/prescribed treatment is always at best an educated guess, but thank goodness for western medicine, because, without it, I for one wouldn't be here. Vicky xxx (I am talking in general terms, because when I was 5, I survived a serious but rare communicable disease despite immunisation. The doctors who treated me then were talking with each other and my parents, but the treatment worked, as you can see…) There is always hope, as drdu says, and she is a very experienced former GP!!!

  • Sharon and Babs,

    So sorry it's back for both of you.Hoping treatment is successful .

    Anne xx

  • Hi Sharon

    Sorry too hear its back!*!* Where about in your back are the pains? I've been having back pain for the last week, like you i've had back pain before but this is different (i might just be paranoid) mine is on my right hand side about the middle, it comes and goes. The journey to Edinburgh from Fife is a bit tedious but you are in the best place. :-) I'm from Glenrothes, i just finished chemo in July, i read your article in the Daily Record which was really sad. What a small world it is your hubby (sorry only know him as grimbo lol) used to referee my sons hockey matches and my hubby places bowls as well.

    Shame you might lose your hair, mine used to be long and really curly but since i lost it i am loving the short look, and lots of people comment how i suit it better like this.

    Love Elaine :-) xxx

  • Hi Elaine so great to hear from u .. someone close by .. I feel all alone up here .. have u mentioned to ur doc about the pain ..I think it would be wise to get it checked to be on the safe side .. I suffer from a bad back anyway but just knew these pains felt different and slightly higher than usual .. .. are u going down to maggies today they are holding a small party to celebrate 7 years there .. so that should be fun .. whatva small world it is that u know David .. we'll need to try and meet up sometime for a coffee maybe at maggies .. its a fantastic place ..

  • I know i feel the same, although this website has helped me, not the same as chatting to someone though. I go to the the young womens support group at maggies, its only just started, you should come along the next meeting is on monday 11th at 7pm, its rubbish there's not a OC support group eh? What time you heading to Maggies today, i never knew there was a wee party lol? I finish at lunchtime so could head down for a bit hour and we could have a wee blether. When i was getting chemo i bumped into one girl who had recurring OC, it was like omg i'm not the only one from scotland with OC lol. Let me know what time you are heading to Maggies?

    Elaine :-) xxxx

  • Its on from 12 till 4 so I'll be there from 12 .. One of my friends is singing at 2 .... And they have cakes and sandwiches .. Be great to catch up .. U would have been there a few weeks ago then I was in with my mum , and the meeting was on at the bottom behind the curtains xx

  • Great i will be there for around 1ish. Cakes yummy, yummy lol. :-) There was a girl with her mum but she had a rare form of cancer though, yeah it was at the bottom behind the curtains. I was there with my friend stef who had cervical cancer which was discovered when she was pregnant with her little girl. :-(. See you soon Elaine x

  • I was sitting at the top table having a cuppa with Laura lol very small world ..cant wait .. ill be wearing a light jumper with a kind of abstract black lions head on it ... incase its busy lol c u soon xx

  • Was great to see u today .. my god could u believe we've seen each other so many times before but didn't know who each other was lol .. was a fantastic day though .. so need to meet again for coffee and a chat xx

  • Hi there Sharon. Rotten to hear that IT'S back again!!!! Two lots of carbo/taxol must have been horrific. I had this treatment last year and was horizontal with head jn bucket for most of the time. Hopefully this new chemo will do the trick and you won't lose your hair this time. Wishing you all the best, love n hugs Izzy xxxxxxxx

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