Hello. I have posted here before but have not posted for a while. I think when I last posted I had just started immuno therapy which I was quite nervous about. Long list of side effects. First treatment went ok. Infusion of prembo something or other. Only took half an hour.A doddle. The trouble started when I started to take lenvitanab orally. It messed with my blood pressure sending it zooming to heady heights. Twice had to go to hospital to keep an eye on me.
There followed an effort to keep my BP below 150 which involved various blood pressure medications. What a palava.During all of this I quite suddenly became incontinent (urine). Quite heavy too. Exploration of tena pants and pads. What joy. It's been difficult getting used to all this. What makes it worse is I have a chronic cough which doesn't help stress incontinence. This cough is a nightmare because it keeps me awake at night .so my sleep pattern is in chaos and some days I am so very tired. I should go to GP but feel it's wasting their time. The oncology team don't seem bothered by it.
I digress. The immuno. Wasn't working ,side effects not good so they stopped it. I am going back onto chemo. Doxorubicin. Has anyone here had this?. My last CT scan showed the tumour I have. Pressing on left ureter isnow 10cm. The lymph nodes have also grown . I know the cancer is incurable. I am afraid of the deterioration that will eventually occur . I see oncologist soon and need to know prognosis.but is this going to help or make living even worse.
Hi I am so sorry to hear the immunotherapy didn’t work for you but fingers crossed the chemo will do the trick. Chemo doesn’t work with my type of cancer so I have no experience with it! I am sure others With experience will come along at a reasonable time in the morning to reply! I am hoping unlike us they are all fast asleep at the moment!
You say about asking for a prognosis but please remember no one really knows! I was told I wouldn’t last until Christmas as I went straight to Stage4 Incurable. That:t was Christmas 2014! My oncologist is as flabbergasted as I am. New treatments are being developed all the time so never give up Hope!!
Regarding how you are feeling just now, I would visit my GP he may have something to help and it can’t do any harm!..
Love Annette x
Hi Oak2
welcome back, but I'm sorry to read things haven't been going so well for you lately.
I'm sure your GP will do their best to sort out your persistent cough, and won't feel that you are wasting their time. As you say, the cough has a negative effect on the stress incontinence, so it would certainly make life better for you if the cough can be controlled. I'm sure they will be sympathetic.
Like Annette says, having a prognosis is like having a 'sell-by-date' stamped on your head! Who wants that??!
Personally, I've decided not to ask for a prognosis, as I think it will stop me from thinking it's worth doing anything, or starting a new project. I'd rather carry on in ignorance!
I know it's hard, always waiting for something, but give the chemo a chance to work....
and keep posting!
Kate
Hmm my reply got lost somehow. Anyway, thank you for your reply. I'm not going to ask for prognosis .As you say, they don't really know. Need to just keep living as normally as possible. I volunteer at Swanage heritage railway in the shop.its great fun,keeps me reasonably sane,and I get to ride free on the beautiful steam engines.
Hope you have good day tomorrow. I'm off to the dentist. No fun at all!
Good morning oak. In 2010 I had IBC and I had Doxorubicin. Everyone is different I know but I was fine. After having it you will pass red urine, perfectly normal. Not sure how you may feel about this and don't think it happens to everyone but I did lose my hair and some of my nails. Not sure if you're aware but in a lifetime you can only have so much Doxorubicin. This is why I couldn't have it for the cancer I have now. Even when it's the chemo to treat it. As far as I'm aware Doxorubicin is a really good chemo known to be successful. Good luck X
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