Roller Coaster

[janmark43]

I finished Avastin at end of October 2018 which kept the beast at bay. I was due to start Carboplatin and Caelyx in March but before that hospitalised for chest infection and then replacement of ureter stent and continuing devastating fatigue. Then out of blue, severe abdominal pain and found to have internal bleeding and needed 4 units of blood. Haemoglobin returned to normal and presumably bleed from residual cancer. Also stent blocked and had left nephrostomy fitted. Finally got to see my oncologist who recommended steroids, dexamethasone for two weeks. The effect was instant and amazing, fatigue greatly improved although still get tired on exertion but at least I can do small chores again and feel much more motivated. HOWEVER because of the steroids effect I jumped out of bed last week and completely yanked out my nephrostomy tube!! Just after thinking I had had my best day for months! I will have a new one fitted next week and then may be up to facing more chemo at last. Have others had instant perk with steroids and how long did they stay on them for? Did the effect last? I wish I had been offered them months ago. It was actually the registrar not the consultants suggestion.

[Lyndy]

Hello- yes I recognise that steroid boost-it’s so lovely to feel better.

But...and as I am finding out it’s a big but...long term steroid use comes with a whole host of downsides.

I take them for rheumatoid flares and a few days tailing off gradually is the norm. I would discuss this with your oncologist- but be aware that over time steroids shut down your body’s ability to manufacture your own version- so getting off them is a problem because you feel a lot worse to begin with. I think it is useful for them to know how much better you felt (and therefore how compromised you are normally) some doctors don’t think that fatigue is an issue but it really impacts your quality of life.

Hope you find a way forward really soon xx

[janmark43 in reply to Lyndy]

Thanks for your advice regarding steroids. I am aware of long term use problems and tapering. I am a retired pharmacist. I guess like most treatments you just have to weigh up the pros and cons for your own situation.

[delia2]

I have taken them about 1-2 times a year for asthma/bronchitis/pneumonia and definitely got the boost. I didn't notice as much with chemo though I took them for nine days a cycle rather than the usual three. I think getting a blood transfusion is a huge boost and my hemoglobin was never as low as yours. xx

[Lind58]

Wishing you the very best on your journey ❤️

[Orsolini]

Hi there - can’t help at all with steroids but interested in your stent as I have one which needs changing. Been in since June last year, should have been changed at Xmas but I couldn’t face it due to other treatment at the time. How long did you have yours before changing? Can I also ask how did you know it was blocked and how are you coping with the nephrostomy generally (when not yanking it out)? It is Lilou will end up with one. Thank you so much - Nicola

[janmark43 in reply to Orsolini]

I had the first stent fitted at the same time as my original biopsy operation in summer 1916. That lasted until late 2017 when I was on Avastin treatment. No symptoms but my urine showed signs of infection when I produced my sample on treatment day. So stopped treatment and had it replaced and all was well. A year later I had it replaced again in January 19, this was because when I was in hospital with a chest infection this New Year a scan showed it was blocked again and I had hydronephrosis. Few weeks later had internal bleed but had no idea stent had blocked again and I had nephrostomy - different hospital. It may be that my stent is now working again but they want you fit another nephrostomy on Thursday. This is just done under local anaesthetic whereas the stent replacement involves a general anaesthetic usually just as a day case and I have not had any problems afterwards. So just a lot of hanging around for the day pre and post op. Take in something tasty to eat afterwards when you are transferred to the day surgery unit. Hope this helps. Opinions vary but most docs recommend changing a stent about once a year.

[Orsolini in reply to janmark43]

Thanks for this, all super helpful. Here in France they say to change every 6 months . I don’t really want a bag - am going to talk to surgeon. I have infection currently which is hard to shift. Maybe a new stent will help....have one currently, yes day op here too.

Thanks again Nicola

[janmark43 in reply to Orsolini]

Yes do have a stent because they are invisible and no hassle. My new stents solved the infection problems - that is until the last time! I am sure a nephrostomy is much less of a problem than say a catheter but definitely preferable to a colostomy whch sadly some ladies need as time goes on. I remember waking up after my big op, feeling my stomach and thinking thank goodness i didn't need a colostomy.

[yo207]

Hi Janmark, I had a positive experience with the steroids. During my first and second bouts with chemo I used to be bedridden for 5-6 after my treatments. On my third recurrence my nurse asked me about my “normal side effects”. After giving her the rundown, she spoke to my oncologist and she immediately added steroids to my regular cycle. Instead of only taking them before and two days after, I took them for the entire week, two pills a day. It was night and day. I did not miss one day of work. I was up, mobile, eating regularly with no limitations. The only drawback was the weight that I gained. I’m happy to say that with the help of weight watchers and a gym membership I lost all the extra weight. God Bless! Keep up the fight.🙏🕯

[SuperHubby24]

Good morning lovely ladies! Reading the comments and general thread, it made the memories of just how tired and 'broken' had made my wife feel when she was having it. It was absolutely off the scale tiredness! But it did what it was supposed to do. She was on it for a very long time, unusually long from what I can make out but it really took its toll over time. Our consultant decided to stop it as it was massively effecting her kidney function and we knew that more chemo was inevitable and that she really needed to be in the best possible shape to commence with that. Its funny but at the time it seemed that she was on it for eternity, but now it seems like a lifetime ago! Our current 'battle' is with her asities, that was never really on our radar up until fairly recently. My wife is tiny, and has this perfect low 'bump'. We call it 'the twins', and joke about them kicking PMSL. It was funny until we were out in a café having coffee and a South African lady said 'Arrrgh, that's so lovely, when is the baby due?'. My wife just laughed as I gave the lady a 10 minute overview about cancer and asities...………. When we got outside my wife said that I should have just agreed and pretended that I was pregnant and be done with it. Anyway, sending you much love and positively XXxx

[Mptelesca in reply to SuperHubby24]

That just made me chuckle. You did the right thing by letting the woman know. Hopefully, she learned something. lol. The look on her face must have been interesting.

Sorry to hear about the acites. I remember looking like I was 8 months pregnant. Hopefully, they can drain? Is your lovely wife on any treatment at the moment?

Marisa

[janmark43 in reply to SuperHubby24]

Thanks for your good wishes. Oh dear one should never ever assume that another lady is pregnant whatever her appearance! My one and only symptom of ovarian cancer was what I described to the doctor as a pregnancy bump rather than middle aged spread. I thought it might be fibroids, little did I know! My brilliant young GP soon put me on two week fast track and as they say the rest is history.

[Mptelesca]

Glad you are coming along! I didn't know they gave me steroids right before chemo infusion. I didn't sleep for 3 nights and didn't care because I felt GREAT. Exerted myself to the point where I would end up flat on my back after they wore off. Tricky little pills.

Sending you best wishes!

XOX

Marisa

[janmark43 in reply to Mptelesca]

Thanks Marisa. I had them as part of a cocktail with my general anaesthetic for stent replacement. Afterwards on the ward I developed a tremendous appetite, wolfed down my supper and also sandwiches and chocolate which I had brought in because I thought I was only going to be a day case. Felt brilliant for a couple of days and then of course it all crashed and I suddenly realised why!

[Mptelesca]

They definitely serve their purpose. I enjoyed the "high" i got the first 3 nights. That's how I found this group at 4 am! Then, the packages started arriving from Amazon. I was binge shopping! I craved grilled cheese sandwiches. Anything cheesy and salty. Dear God...I was gaining weight while on Chemo! If I ever have to go back to IV...I would not turn the steroids down as they really keep the throbbing pain and general malaise at bay.

Hope all is well now.

XOX

Marisa