Mummy

Hi I have been reading some of your messages and just wondered if anyone had any advice? My situation is slightly different to other simple cases of 'cancer'. The story so far: In May 2008 my mum awoke one day feeling extremely ill, vomiting, dizzy and generally awful. This continued for a week with her not being able to keep down even water. She went into a local hospital and they put it down to a viral infection in the ear which causes sickness and vertigo. She was treated and appeared to become better. She came home and dramatically declines. He vision became impaired with the sickness reoccuring up to 20 times a day and she was unable to walk unaided due to the dizziness. She was urgently rushed to King College Hospital in London where they tested her in able to diagnose something. From June 2008 she was in hosptial and rapidly declined to the point of her being unconscious and unable to communicate. She continued to be sick until they injected her with anti-sickness drugs and they discovered her own anti- bodies were attacking her own body at a central cell which controls eye movement, co ordination, etc which then caused the other symptoms of sickness etc. Every single test was carried out on her, with some of the top doctors in the country baffled by her situtation. They tried to suppress her immune system to stop her body producing the anti-bodies. this caused her to get pneumonia and her blood pressure drastically dropped to the point where docs gave us 'the call' as they thought that was it. Thankful somehow they raised her blood pressure. However the family were sat down and explained to that the docs had run out of avenues to explore and she was declining rapidily and to prepare for the worse. They attempted one more thing called a Plasma exchange, whereby her plasma (antibodies) were seperated from her blood. she was then given a dose IVIG which contained other people's antibodies in the hope that her body would recognise this and stop producing the ones that fight her own body. 10 days later we noticed small changes and after 8months in hospital after extensive rehabilitation she came home just before Christmas 2008. She was still unable to walk and talk well but gradually she got better. several time she relapsed and had more doses of the IVIG treatment and each time she had it she seemed to get better. The docs were still worried though as initially they believed what ever made her ill in the first place came and went. However, her body was still producing these 'bad' antibodies so they continued testing for an underlying cause. In Aug 2009 she went back in for yet another dose of IVIG and continued to do more tests. All along they had seen a lump on her throat that they weren't concerned about as it was 'metabolically active' but not cancerous. Last Friday she was told it was stage 2b Oesophagaul cancer and on wednesday told it had spread to the lymph nodes in the area and stomach. Docs have said that she will either have radiotherapy or chemo-radio therapy but apparently surgery is not an option at this point as its spread to lymph nodes. After all the heartache last year we really thought she was getting better and this is such a blow to the family. Mum has been so strong about it all and taking it in her stride the main thing she is concerned about is losing her hair through chemo as she lost it last year through the shock of what happened to her body!!! I would just like some advice, i know this is a unique case but anything will help how im feeling right now. My dad has told me not to look at statistics as if we had asked last year the docs would have told us mum had a 0.05% of surviving what she did. She is a fighter and hopefully has much more fight in her. x Georgia x

Hi Georgia,

I read with interest your e-mail because my sister, a dialysis patient, recently had IVIG treatments and my husband is an EC Stage 3 survivor of 16 months.

Regarding the IVIG, my sister's was used to reduce antibodies her body developed due to a prior unsuccessful kidney transplant 14 years ago and several blood transfusions over the years.  These antibodies make her high sensitized which means that she would have a hard time keeping a kidney when, and if, one becomes available unless it is a perfect match.   Unfortunately, the IVIG didn't work for her.

I'm guessing that your mom probably didn't have much lymph node involvement if it is Stage 2b?  How old is you Mom and how is her health?   My husband had the surgery in March 2008 followed by chemo and so far everything has been fine.  He did have a difficult time with the chemo.

I wish I could be of more help.   Good luck.

Maria

Hi Maria

Thanks for your reply.

Well last week we found out that is has now spread to her lymph nodes in her Oesophegus and Stomach. So this rules out an op.

We have been told she'll have a few sessions of chemo then if the tumour has shrunk, she may be able to have an operation.

My mum is 48 and has generally been in good health all her life. She drinks little alcohol, does not smoke, is not over weight, all the high risk factors do not apply to her. However one does...drinking hot drinks. She tends to have all food and drink piping hot and this seems to be a common risk factor of OC.

She is currently waiting to hear when treatment starts which will be in the next few weeks. However since she has not had the IVIG she is becoming quite ill. her vision is becoming blurry and is very wobbly in general.

We just want to get the ball rolling now really x