Hi There, My name is Samantha im 23 and i have a condition called aggressive fibromatosis, the best desciption i have for this is a soft tissue non malignant-malignat tummor that is very localy agressive and recurring,an mine is rather infaltrive..but they do not metastasize like malignant cancers, but mine seams to send fealers or tubers out... it curntly takes up at larg part of my chest cavity, starting at the top of my ribs moving down between my ribs to my inner chest wall where it is so larg its squashing my left long and moved my heart to the right (its started growing round the side and front of my heart as well) i have had this before in my breast tissue where it was removed with no radio or chemo. now this one has been treated with tamoxifen and sulindac for 5 /6 months and that has had no effect at all.. i start caelyx tommrow, tho i dont know if i can face it, how are you suposed to handle this stuff.. ya know.. i wanted kids.. not a life sentance
FormerMember
Hi Sami, so sorry to read your blog. I can tell you're feeling really down at the moment. This must be horrendous for you. I don't know much about your condition, but have read about it in the past and realise what a horrible illness it is.
You're so young to be facing this and I don't know what to say to you except you will find many friends on here, hopefully some who will fully understand what you are going through. Let me know how things go for you and keep your chin up. Best wishes, Christine xx
cycle one of caelyx down.. lots more to go, after 4 alleric reactions lots of different sterroids, piriton an stuff latter we finaly finishes cycle one.. so far so good just feel too warn and sweaty.. not sickness yet.. went straight out for pizza.. i wonder if this is all down to the glucose that they used to water down the chemo with and if im on sugar high..but hopefully i wont be too bad over the next few days x x x the reactions were quite extreme but hey 40 mins of pain and agony for 3-4 of being reasonalbly well im sure i can handle that !! thank you christine your right i was down when i wrote that last one.. guess you have days like that i normally try to bottel it up for mt step kids sake but.. last night was hard xxx oh well off for another ice pop and sum pills ill keep this updated through out my treat ment.. you never know it might help someone else
I can understand some of what you are going through as my friend's son also has neurofibromitosis. He is sixteen at the moment and seems to be coping well with it. I know that there are different forms of this disease and think he has a milder form - we hope! The doctors did say that when he reaches puberty(which he hasn't done at the moment) it might get more agressive. At present he has the non-malignant tumours on his waist and one behind his right eyeball which hasn't developed over the years to anything more agressive - thank goodness! I know every day for his parents is very worrying as there is no limit to where these tumours strike. I'm sorry that you have to go through all the treament too, and I can sympathise with the chemo treatment too as I have just finished eight cycles of different drugs. I also found that I had a sugar craving after my chemo treatment - I think it's down to the anti-sickness pills they give you, and I used to rush home and scoff a big bag of tablet or fudge - I really enjoyed that bit of it ;-), the only trouble is I've now put all my post surgery weight back on - and more! :-((
I hope that the rest of your treatment goes well and they can keep these tumours at bay. There are a lot of lovely people who are on this site who will keep your spirits up when you are feeling low and help you get through the treatments. Let us know how your are doing and keep in touch.
well we are on day after first chemo cycle and i feel fine.. infact im starting to worry they gave me colourd water not chemo and i have been cond and they have just given mee coloured water... i was suposed to at least pee pink/red.. nutting no sickens noe tired ness.. yeaster day for like 6 hrs after i was just tooooooooooooo warm but yeah.. should i be concernd?
Hi Sami, I don't think you should be concerned, everybody reacts differently to chemo. You may find as the sessions go on you have more side effects as the drugs build up in your body. Just enjoy feeling well! Glad to see you're coping well so far, keep posting and let us know how things go. Christine xx
