Are there any ladies or groups for stage 4b cervical cancer I could connect to/with?

Hi I was diagnosed in February with stage 4b and currently on my 5th chemo. I went for my scan after my 3rd chemo and wasn't expecting much results, I told myself as lond as it hadn't spread or gotten bigger I would be happy. They told me all my cancers had shrunk and one being 6cm had halved to 3cm, aslo my cervical one was less bulky. So to say I was over joyed is an understatement. I keep positive and just take one day at a time. Keep going xx

Hi Angie  It is lovely to meet you online.  It sounds like we are very similar.  I was also diagnosed in February and am about to have my fifth session tomorrow.  My results were similar as well from the sound of it.  I am struggling with the chemo and sometimes with the whole diagnosis but generally trying to get through this and find ways to stay positive and help myself with complementary things such as acupuncture, etc. as well.  Where are you living?  I'm in Wiltshire.  Carla

Hi I'm in Sheffield I have my 5th chemo on Tuesday. I know exactly how you feel. It's aot to come to terms with. I just try not to think to far into future. Does the acupuncture work? What side effects have you encountered so far x

Hi Angie  I do a lot of alternative things.  I am on the COC protocol for a start which you may have heard of but if not just say.  I am not tolerating all those drugs at the moment with my liver so am sort of on and off it but hope things will settle.  I do acupuncture the week of chemo only as my platelets are low in-between and I get bruising if not.  I have only had two sessions but have high hopes for it.  I also do oxygen therapy which is really very important.  Cancer cells hate oxygenated bodies and cancer suffers are usually low in oxygen.  It also really helps with brain fog and the numbness in your fingers and toes.  Plut I love my centre - they are really kind and I enjoy going there. I also do reiki type energy healing twice a month.  I have a life coach and different type of energy healer as well who work through the issues that likely got me to the place I'm in.  My life had been going downhill for the past three years and accumulating in cancer so I need to work through the journey rather than just this suddenly happened.  Lastly I read Jane's How to Starve Cancer and will be trying to do that protocol as soon as possible.  It's complex and right now the hospital won't allow me to do most of it with the chemo but I want to do it as soon as I finish chemo.  Having all of these things helps me to feel more in control and I hope has contributed to the excellent outcomes so far.  I'm in Wilthisre.  Had my 6th chemo yesterday and my 6th will be 18th June.  Then scans and if the scans are good they said that I will hold off on radiotherapy and go onto maintenance Avastin which the consultant seemed very pleased about but I haven't researched it yet.  However, it depends on my results to these three chemo sessions being as good as the last three.  Fingers crossed.  x

Hi just wondering how things are going. I was diagnosed in Feb with stage 4 cervical cancer, also in my lungs, lymph nodes and liver.. I'm on the same chemo as you and I have my last (8th) one on the 9 th August. 

Hi there, How are you managing with the Chemo.  I'm afraid I felt like I barely made it.  It was horrific and I don't know if I could ever do it again.  The consultant was unsure whether to give me my final dose as my symptoms were so bad neurologically/neuropathically on the drug.  I only had five sessions but perhaps the dosage was different?  They do seem to do slightly different things.  I have read that some consultants do more sessions but at a lower dose and that is easier to manage but mine was really about the highest dose possible and it was horrendous.  However, since then I have had a scan which showed the lungs are still disease-free and the pelvis tumour has reduced by two thirds.  I had a lot of cancer in my pelvis so that is considerable I think.  There is still no possibility of surgery because the cancer is still in the vagina as well as the cervix so it is radiotherapy to try to get rid of the pelvis disease.  However, they were worried that going straight into radiotherapy (not quite straight as you have to be off Avastin for 6 weeks) would possibly allow the cancer to return in the lungs so instead they are trying me on two months of Avastin only.  They said that the hope is that the lungs will remain disease-free and the pelvis area will continue to shrink or even stay stable.  If that happens I can continue on the Avastin all the time it is having this effect and move to radiotherapy when it no longer works (don't you love their positivity!!!!).  Avastin doesn't have side effects in most people and I am tolerating it really well. I pray it works because it is like getting back to a near-normal life.  It has been 6 weeks since my last chemo and I still have moments of dizziness and breathlessness.  Also, my toes are still numb and my eyesight is not great but it's much better than chemo.  I have had some private DNA tests which have shown my detox pathways are compromised which is likely why I personally found chemo so very difficult and some people don't find it very hard at all.  It is such a personal thing I think. How have you found it? 

Hi Carla, my scan after my 6th treatment showed that the cancer iny lug and lymph node had shrunk again and others are stable (I class these as being asleep. They are giving me 8 cycles because I'm tolerating it well. Over the course of treatment I have been in hospital 4 times. I've had a blood clot in my groin so on daltaparin for the forcible, been neutropenic septic 4 times and had trouble with my magnesium levels. So it's been eventful. The pacataxel I'm on causes my feet and fingers to go numb but hopefully that will improve once I've finished the chemo. I haven't got the surgery option also they don't want to give me radiotherapy just yet unless I get symptoms. So once the 9th August is done I can try to get back to some normality. Oh and my hair is goowing back really quickly. It's good to here from you xxxx

Oh no - those symptoms are horrible as well - I am so sorry to hear that.  My magnesium levels were dreadful as well.  They said after the 5th that they were not quite bad enough to need IV but near!  They didn't give me anything for it but my integrative doctor told me what to get and I can send you the make and dosage if that helps.  It is apparently really important to not have low magnesium or Vitamin D for outcomes.  Mine is still low obviously but I have just started the supplement which is just a half teaspoon of powder that you can put in a drink once to twice a day.  It's really easy.  I also take a Vitamin D and K supplement as you need high Vit D and K but without it being toxic levels.  Most of us are low of both.  I have been taking the supplement for 7 months and my levels are still not as high as the integrative doctor would like them but not far off.  My fingers have almost returned to normal now at 6 weeks post-chemo.  My big toes haven't and are still quite numb.  Both feet and hands do look yellow sometimes as well - particularly if cold.  Where do you live and where are you having treatment.  I live in Wiltshire but am having treatment at The Marsden.  My cancer is classed as cervical and is being treated as that because that is how they treat cancer, accordingly to where the first tumour started, but it is a really rare cancer that apparently they know very little about!   My hair has just started to grow but I am impatient!  I look like a skin head but because it is fair it doesn't show as much.  Wish it was dark.  It is nice to have someone else to talk to who is same cancer and stage and same time in treatment really even though we are doing slightly different things.  I'm hoping not to have radiotherapy for a while.  They want me to get my weight sorted first which is not easy on the diet I am on.  x 

Hi, just wondering how you are doing and where you are up to with your treatment. Would be lovely to hear from you xx

Hi Angie  Lovely to hear from you.  How are you doing?  What has been happening?  After we last spoke I had a little break from treatment to recover a bit and then the scan showed the cancer in my pelvis had started to grow so I had 6 weeks of chemo radiation and then two inpatient stays of brachy.  It was really really tough.  The chemo hits me hard even on low doses.  The radiotherapy didn't trouble me physically at all and I was lucky with that.  LIkewise the brachy was fine - obviously, it's like a ridiculous torture from the 13 century but that aside it wasn't as bad as I thought it would be from what the Onco had said and I didn't have any of the side effects they warned me of.  Really it is just the chemo that I don't tolerate at all.  It nearly kills me and I just am terrified of it.  That said, all of this and the integrative plan that I am on caused the cancer to go and I had clear scans in November and then again in February.  I have my next scans in May.  In the meantime I am concentrating on oxygen therapy, Vit C infusions, mistletoe injections, diet and trying to deal with my anxiety!  I am super excited to see the sun today.    I am feeling that the chemo did cause changes in my brain and they have not gone completely and I do wonder if other people fine the same thing.  Difficulties with finding the right words, being clumsy etc.  How do you find it?   x