Coping with the steroid cliff-edge

FormerMember over 5 years ago

3 replies
23 subscribers
3612 views

Hi all,

My dad was diagnosed a couple of months back, he's already had 2 rounds of R-Chop & 1 of 3 lots of intrathecal methotrexate. His first round he had as an inpatient, he was pretty sickly and then they discovered his severe back pain was being caused by 2 broken vertebrae (due to the pressure of the lymph nodes) so because of his pain they kept him in for 2 weeks. His last lot he seemed to tolerate pretty well, he only started to feel rubbish on the 2-3 days after his 5 days of steroids. Now me, my dad, my sister & our dogs booked to go away for a few days but as bad luck would have it this falls on the steroid cliff edge days - he has his treatment on tuesday and his steroids will finish on the Sunday when we go away Monday to Friday. We can't move the break as it's all fully booked, and we can't move the chemo so I wondered if anyone anywhere could offer any advice on anything that might help take the edge off if he has a couple of post-steroid days of rubbishness. The specialist nurse pretty much said it's part and parcel of the treatment and we've to pretty much suck it and see; so to be honest I'm clutching to the hope that every round can be different and he might be much better with this one

Thehighlander over 5 years ago

I am not much use for you as the one thing I never had a problem with was the steroid cliff edge, let’s see if any other the others can help.

Have a great time away and I am sure that he can get through this and the change of routine may well focus your mind in a way that he does not overthink this.

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

johnr over 5 years ago

Hi, the are a potential couple of options depending on how important the break is, the treatment can be delayed for a week, I had a couple delayed due to blood counts being low and we also agreed a delay so I could attend a wedding but as the counts had been low on the previous cycle that delay was not needed.

The other thing to ask is could the steroids be tapered down so the crash is not so severe, however if he struggles to sleep during those 5 days of steroids the tapering of the dose may not help, when they do taper they give a reduced dose for a couple of extra days, which some other patients have had to help manage the crash.

Its also possible that by cycle 3 this neutrophils count may be low when he has his pre chemo blood test to check he is ok to go ahead with it so it may even sort itself out as it was the 3rd and 4th cycles I had delayed before I was given filgrastin injections to boost the neutrophils count.

hope this helps

John

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are

FormerMember over 5 years ago

Hi there. I also suffered from this cliff edge when coming off the steroids. My consultant solved the problem for me by reducing the dose gradually over 5 days. Warm Wishes.

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