Chemo drug CYCLOPHOSPHAMINE and bladder cancer

Flaneuse said:

Thank you so much for messages of support. Surgery over, and home again. All went well. Now the wait for two weeks or so until histology arrives. Miraculously, the terrible lower back pain I've had, mostly centred on one side (a known symptom of bladder cancer) has disappeared. Wonderful. Very little abdominal discomfort remains. I'm told to behave "like a fragile patient" for two weeks.  :)

So sorry to hear what you have gone through @Flaneuse :( Wonderful to hear that surgery is over and you are keeping a good spirit. Sending you speedy healing vibes. x

@Annski
Lovely to see you on the forum.  It's hard yards watching others go through it and harder having a cloud of worry over you!
Take care

OMG Fran I have been thinking about you so much over the past few weeks/months, wondering how you are, thinking maybe you went to Paris after all ... and then, coming back to the Online Network for the first time in ages I see this. I am so so sorry, it is devastating news, this is so awful. I will be in touch shortly. Like everyone here, I am hoping for a good outcome for you and good news as soon as possible.

 Meanwhile I am pleased to see so many of you still on the Network. I went completely silent for ages because I was in a state of confusion, reading every entry, thinking about everyone else and what they were going through.  Technically I was fine and everything was ticking over well. Taking my Femara religiously, behaving sensibly, keeping off the booze and all the rest of it but following the twists and turns of fate of others and identifying with them, I just couldn't help it. Various advisors suggested better to make new pathways for my consciousness, cancelling the constant "and by the way I have cancer" messaging to self, so I could throw myself into my other interests and develop the various projects I had been wanting to do before this shitshow made its debut. This did make sense. Plus, I didn't want to be a "downer" as my daughter says, so many others on the Network were facing far worse things with fortitude and good heart.

But am not coping well lately - am now in year 6 of ER+ and my latest oncologist/consultant tells me the statistical likelihood of METS is higher with every passing year now given the advanced cancer I had and the many affected lymph nodes. There is nothing they can do to test or assess it and none of the fancy new treatments will help because this kind of cancer is refractory to those treatments. I have also been doing a ton of scholarly research all of which is totally fascinating but merely confirms that there is no magic bullet anywhere on the horizon.

 I know there is a strong community of women who are now living with METS, but I feel completely lost in the middle, the certainty of recurrence/METS without having any idea how long it will take now is making almost every part of my life unmanageable. All the same, mustn't grumble! Not there yet. Sorry everyone, Fran's news has really thrown me.

Very best wishes, fingers crossed for a good result. 

hi @Flaneuse,
so very sorry to hear of whats happened to you,but pleased the pain has gone away, I am very interested in all of this as I am on cyclophosphamide, I know the next couple of weeks will be hard and frustrating for you,but let everyone look after you,be gentle on your self, take care,
wendy55

Thank you so much for messages of support. Surgery over, and home again. All went well. Now the wait for two weeks or so until histology arrives. Miraculously, the terrible lower back pain I've had, mostly centred on one side (a known symptom of bladder cancer) has disappeared. Wonderful. Very little abdominal discomfort remains. I'm told to behave "like a fragile patient" for two weeks.  :)

Thinking of you @Flaneuse xxx  I hope the surgery went well and that you are not in pain or discomfort xx  all the best for your pathology too xx

Fingers crossed 🤞 
Hope the surgery is complete and your recovery is smooth
Sending a virtual hug

Very best wishes for tomorrow - let’s hope it’s a relatively quick fix. 

 Very sorry that this has happened to you, especially as a result of a previous treatment 🙁.