One year post transplant

12 replies
11 subscribers
1362 views

Hi All

My wife who had a Stem cell transplant last August has been called by her local Hospital team asking g her to come in and have another bone marrow biopsy. This team treated her initially with many chemo regimes over the first 7 months from diagnosis and following relapse in preparation for the Transplant

Her London Transplant Team are not sure why they want to carry out this biopsy as since transplant, she has had regular blood tests and all come back good, no Gvhd or any other issues. Her transplant consultant says although it's not a problem having this procedure he just can't understand why.

He is going to ask the local hospital why they are asking.

We haven't heard back from him, however today the local Hospitl called today to book my wife in on 8th September.

Considering she has been fine over the last 12 months issue free, my wife and I understandably now feel anxious and obviously put more worry into our minds on the results.

In addition, although my wife has had 16 of these procedures to date the knowledge of the treatment and pain involved exacerbates her anxiety.

People may say, yes, go for it, at least your know it's all ok, and you can be reassured, but there's always the risks wont be.

We both feel this is unessesary if your bloods remain good and you have no symptoms. We feel the London transplant team feel the same, but we feel they will not intervene and stop this.

Anyone else had similar experience.

FULHAMBOY (Nick)

Thehighlander over 2 years ago

Hi Nick, I was under the soul care of my SCT team until I was discharged back to my Heamatology Unit so everything that was done until that discharge as decided by my SCT Team.

I would think her care is still under her SCT team and they should call the shots.

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

Fulhamboy over 2 years ago in reply to Thehighlander

Hi Mike

Our thoughts exactly, we're told she won't be discharged until 5 years post transplant from her transplant team.

Just feel that this is totally unnecessary unless the bloods showed any issues.

I know the local team are keen to keep up to speed with her condition, but this seems a little extreme.

Hope the transplant team Intervene, after all, if she needed a biopsy to check how thing are, surely this would be done by them as the team currently providing her care.

It all seems a little odd.

NICK

Thehighlander over 2 years ago in reply to Fulhamboy

I do hope that common-sense prevails.

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

Fulhamboy over 2 years ago in reply to Thehighlander

Once again, I agree, but sadly common sence is a rarety these days.

Thehighlander over 2 years ago in reply to Fulhamboy

Yes

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

parkrun mark over 2 years ago

When did your wife last have a biopsy Nick ? if your consultant has them results and they are all good there should be no need for another one.
My only other thought is if your wife was on a trial such as the AML 18 trial her original team may want one for that.

Fulhamboy over 2 years ago in reply to parkrun mark

Hi Mark

Her last biopsy was just prior to her transplant last August.

She was not on any trial as far as we know as this was never mentioned.

parkrun mark over 2 years ago in reply to Fulhamboy

I had a biopsy every month for three months straight after transplant, and then one every three months since. However I am on a trial but it’s strange she hasn’t had any since before transplant

Paul1969 over 2 years ago in reply to parkrun mark

My last BMT was two years after my stem cells. All done with the team at Barts where I was treated and never anywhere else.

Paul

What is a Community Champion?

You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.

Fulhamboy over 2 years ago in reply to parkrun mark

We had a call from her team saying she can have one if she wishes. They wouldn't do it themselves as all bloods very good.

The local hospital are checking for MRD as its been a year and only a biopsy can find this if present. It's a 6 of 1 and half dozen of the other choice.

If she refuses and there is a presence it could get worse if left alone. If present and found early intervention may help reduce effect. She was told however by her transplant team that as her match was 100% she could not have a 2nd SCT if there is any evidence of discease.

A bit of a dilemma and worry, but she has decided to have the biopsy and pray all is well.

Fulhamboy (Nick)

More from this forum

One year post transplant