Scans after SCT

Hi, relax and take a breath. You can never pinpoint why consultants do what they do. 

Yes, I had random scans following both by Allo SCTs no problems after my first.

The scan 2 months after my second SCT showed I had "The most impressive Hiatus Hernia" a result of being very sick after my FluMelAlem30.

It also showed a node on my lung, I went back a few weeks later for a CT guided biopsy but the pre-biopsy scan showed the node had reduced in size and the surgeon did not think it was anything to worry about..... that was 5 years ago and it’s not been a problem.

I don’t know if BuMel is stronger than BEAM but anything with Melphalan (I had FluMelAlem30) in it is a massive hit to the body in it’s self..... M being a distant relation of Mustard Gas!!!!

In the post SCT journey you learn to ride the waves, expect the unexpected l, not over stress everything as 99% of the time it’s all a regular part of the post SCT journey ((hugs))

The Melphalan was awful. Though I had a reaction to ifosfamide that was worse.

I guess I'm in an unusual group, not having had symptoms like night sweats and fevers before diagnosis. 

I just hope that everything is okay. He says he doesn't expect to find anything and he couldn't feel anything when he checked today.

I was exactly the same with regards to symptoms.... apart from bad skin as I had a skin lymphoma.

Over my 21 years on this journey my view has never changed ‘better safe then sorry’

True. At least I will know one way or another. It's better he checks than doesn't, it's just anxiety inducing yet again.

I'm due to start the survivorship program, which hopefully is helpful in dealing with all this crazy anxiety.

I was actually discharged from my SCT and Heamatology units in June 2018 my second SCT was October 2015.

Apart from me having full bloods and review with my GP once a year and a follow up call with the SCT Late Effects Nurse that is me.

I was told “Mike go live your life, you know your body you know where we are...... you don’t need these letters coming through the door for you to stress over and come in to see us for 20mins”

This was a great move and if it was not for helping on the Community the memories of my SCTs would be very fuzzy ((hugs))

I hope for a clear scan and then getting on with my life. I think going back to work will be a big help. There will be less time to dwell on things.

Hi, I do understand how you feel regarding the scan. I had an auto stem cell on 24 June 2020.  I just had to do a quick count - that puts me at day 234.  I did feel that due to Covid -19 my after treatment appointments had been less intense.  Think I have had bloods done 3 times and two face to face appointments and no scans.  I did question this on the last telephone appointment and asked if was normal. They sort of avoided the question and said may think about it next time.  I do recall someone on here saying (I think it was Johnr) saying that there are no hard rules on scans - some do and some don't.  I guess the key is how we are feeling and if we are concerned about something then they may include a scan as part of checks to establish all ok. Like you I was initially pressing for a scan but now feel relaxed about it.

I have been working (home based) since September and 100% that helped take my mind from the worry.  Of all the treatments I have had including RCHOP and the SCT - the post SCT period has been the hardest in terms of the battle between the ears.

Good luck sure will all be fine.

Mike

Rather than scanxiety, why not replace it with scanticipation...of a clean scan?