Stem cell transplant

Thank you Ally

I hope you are doing well now. Thank you I appreciate  your advice.how long did it take you to recover?

Alice 

Thanks Ally and ((hugs))

Hi Alice, it’s a pretty slow recovery after a ASCT. By 6 months I was back doing one day at work but I started off with gentle walks and lots of rest.  I think it was one of the posts on this site that advised measuring walking by lamp posts. So every day you try to go an extra lamppost in distance, some days that works and others it just doesn’t. My aim was to be able to do the school run! There was also something again on this site about measuring your recovery in terms of if and what you can cook for yourself and for others. So initially you might be able to make yourself some toast and a cup of tea and eventually cook a whole meal. Again my aim was to make the pack lunches for my children! Not very exciting but it’s just something I really wanted to do. The only thing I have learnt is that I have had to accept that my body has really been through the mill and I probably won’t run anymore marathons but I can take my girls for a bike ride, I can work and I can go for long walks with my husband - just give yourself time. Have just read this back to myself and it does sound a bit preachy - sorry, I hope it is of some help to you. Let me know when you are in for your transplant and if you have anything else you want to ask please feel free. Ally x

Hi All

I'm due in for my stem cell 2nd sept.  I’ve been working myself up believe it or not, not about how bad it will all be, but about the Hickman man/ pick line they put in at day one.

It’s been needle city throughout this whole cancer thing and I've managed pretty well. Even the bone marrow biopsy which was hell. I’m the worlds biggest wuss for needles, How I’ve even got this far has amazed myself. 

Can anyone give advice and be honest. How bad is it when it is being put in. I’ve heard horror stories of wires running through the veins and all sorts 

thank you 

Mark 

Hi Mark

Like you I was worried beforehand.. but found there was no need to have been.

I had a picc line when I was having my treatment. They couldn't tell me if it was going to be a picc or a hickman until I got there for some reason that I cant remember now.

The picc line was a doddle.. no pain, no stress.. easy.

After looking at my veins with a scanner type device I then was given a bit of local anaesthetic (usual slight sting) and then a small incision was made in my upper inner arm. 

They fed the tube in slowly. Didn't feel anything.  Sent me for an xray to check position. Came back for slight adjustment.

All done. Stayed in for the next 7 months with no issues. Came out very easily. Made life so much easier for me I wished they had done it right at the beginning of treatment.

I am sure someone will be along regarding hickman lines shortly.

Good morning to Mark  living in stress city....... wuss lol

Central Lines are amazing things. How they ever came up with the idea and found people to try it out on - I just don't know.

I had one PICC Line for my main chemo and that was over and done with in 15 mins, a little sting numb the area and is was done and I had no problems with it during the 4 months.

Over my two Allo SCTs I had 4 Hickman Lines - 2 each for my two Allo SCT. They would not trust my stem cells with a PICC but other units have no problem with using a PICC.

The main reason I had two each time was one was not working 100% and they did not want to risk my precious brothers cells and the second time I got an infection in my third line.

Honestly......... I would have multiple Hickman Line put in before another BMB. This is a total mind game as it is treated as surgery but honestly - hand on heart, its a few stings from numbing the areas and a little pushing and that is it. It took about 30 mins and apart from the function and infection issues I had with them, I had them in for a total of 6 - 7 months.

The great thing is that the need for needles put into your arm is reduced, it won't take them away completely as at various points bloods can't be taken from the line as its being used for treatments or fluids, so you will not escape from needles completely but it reduces this down greatly.

As you will have lots of clinic following your SCT the flushing and dressing of the line will normally be done at clinc once a week by the nurse team.

You will do great.

Thank you Paul and TheHighlander  for the excellent advice. I won’t be so worried now. 

My only question is you both stated you had it in for approximately 6 months. What the hell is that all about lol Don’t you have it taken out after leaving hospital for the stem cell transplant.

Is it that you both were in a long time?. They told me that if all goes well I could be out maybe in 3 weeks.  I see that you had your siblings cells.  I was talking to someone at the hospital and they were telling me about SCT from donor and they said they deemed more in depth and serious than the auto I’m having.   

Did you come home with it still then ?

Regards

Mark 

Alice123

Hi Alice, some great help from Ally and do hope that this is helping you along the bumpy road.

As Ally has said, recovery post SCT can be so different for every one. I sailed through my first Allo SCT and had no recovery issues, but for lots of reasons it did not work. The second Allo SCT was always part of the big plan.

The first SCT was a newish method of treating my skin Lymphoma so it was always going to be 50/50 if it worked. I have meet with a lad at our local Maggie's Centre who has the exact same condition (1 in 200,00 chance) and he us getting the same treatment I had for my first Allo back in mid 2014...... but they will have learnt lessons from my first 'go' so I expect his Allo to be more succesful and still expect his post SCT recovery to be relatively good.

My second SCT was full on - a last throw of the dice thing (but years on there are other options on the go) Before I left the SCT Unit after my first Allo, my head SCT Consultant told me that going through a SCT was like doing a boxing match and a marathon every day I was in hospital and this was done without any training......... as my recovery was great I thought "look at me!!"

But following my second she was correct and my recovery time was rather long as I did develop some issues that help me back........ but it worked and I am in remission from a condition that I was told I would never be in remission from.

I have posted this picture before but I think it sums up the SCT journey

((hugs))

Hi Mark, so last question first.

A donor SCT can bring more problems as it is just like any organ transplant as your body does its best to 'kill' the alien that is now living in your body.

So for the first 100 days post Allo SCT you are on Immunosuppressant drugs, a class of drug that suppress the strength of the body's immune system. Some of these drugs are used to make the body less likely to reject a transplanted organ, such as a liver, heart, kidney and yes, Stem Cells. These drugs are also called anti-rejection drugs.

I was on Cyclosporin for the first 100 days and it was rank, the smell was unbelievable and they were big capsulas  The main thing that is looked for is developing GvHD where the body basically try to kill the Stem Cells so the Immunosuppressant drugs are like the referee in the battle. At day 100 you have a Chimerism Test and Bone Marrow Biopsy to see how things are going and if progress is being made this drug is slowly reduced and the real for supremacy starts.

A good question about the length these line were in and I did aske my team in the early days.

My PICC line was taken out 15 mins after my main chemo was complete........ but I was going to get a Hickman put in 4-6 weeks later.

Post Auto and Allo SCT you will have a lot of clinics where lots of blood tests will be done, your counts may well not recover quickly or even drop through the floor so some help using blood transfusion and platelets are often required. A high percentage of folk post SCT develop infections so may end up in hospital having IV Antibiotics so it is best to leave the line in for a period of time 'just in case'

Keep your questions coming.

Hi Mark! I am on my third Hickman line, first was put in September 2018 for my chemo and that stayed in until May this year where a skin contaminant meant they had to swap sides the line was in, and then an infection in the second line necessitated this third one. I had my transplant 1/02/19 and like you've said was out in three weeks. Keeping the line is a judgement call as for the majority of patients going through transplant, peripheral access can be quite poor as chemo and radiation cause your veins to thin and become weak. A large percentage of patients will need ongoing IV treatments after their transplants like blood transfusions and platelet top ups. 

If you end up unlucky like myself, your Hickman line is needed for GVHD treatment (ECP) or weekly magnesium and potassium top ups. As you receive lots and lots of blood tests in the months after transplant, poor veins might mean keeping your line in to make this less traumatic for you because your transplant team will certainly require weekly bloods, sometimes its twice weekly or more. Every unit is different as any line in your body is obviously a possible source of infection, but sometimes it's the only way to get things in and out of you so the benefits outweigh the risks.