Hello K_N (and your Dad),

Nordic protocol is similar but not identical.  It is six sessions of chemo at three week intervals.  1,3 and 5 are outpatient and are R-CHOP, except the first session excludes the Rituximab.  2,4 and 6 are inpatient (I was in for four nights each time) and are Rituximab and high-dose Cytarabine (four doses instead of two and no dexamethasone or cisplatin).

About three weeks after the chemo, I went to be primed for the stem cell harvest.  This consists of a mild chemo (just cyclophosphamide), followed by seven days of high dose GCSF (three times the standard amount).  This frees the stem cells from the bone marrow into the bloodstream.  A week later I was harvested.  I was lucky in that the yield was good at the first attempt..  Sometimes multiple goes or extra GCSF are needed.  I found the procedure very uncomfortable as you need to keep your arms straight for four hours plus and I got cramp in one arm.  Try to get the nurse to get you in a comfortable position before you start,

The stem cells are then frozen and kept until you are ready for the transplant.  In my case, this probably would have already happened, but the consultant thought it would be better for me to go ahead with a long-planned holiday (to Japan, for the Rugby World Cup).  Then I had to change hospitals as the original one lost one of its haematologists to early retirement and could not get a replacement in time.

Probably four to six weeks after the chemo finishes, you will need a CT or PET/CT scan to confirm that you are in a state of Full Remission.  Without this, they will probably not proceed with the ASCT.

Best wishes,

Peter

Hi Welshenglish.

Just checking to see how you are doing? How did it all go? Are you in remission?

Hello K_N, thanks for asking.

My treatment is completed and I am home and recovering well.  I had the stem cell transplant at The Christie hospital in Manchester.  I had a PET/CT scan in mid November, which showed that I was in Full Remission.  The hospital then put me and my wife up in an apartment in Manchester for 11 days from 21st November whilst I underwent the Conditioning Therapy and received the transplant as a day patient.  During this time I was able to walk around the city and eat normally including eating out.  They count the time from day zero when you receive the transplant.  On day four I was starting to feel unwell and on day five (2nd December), when my immunity dropped as scheduled, I was admitted to the isolation ward, where I stayed for 16 nights.  I was quite poorly for most of this time, feeling sick and very tired.  I was hardly eating or drinking at all.  I was on an intravenous drip most of the time for fluids, antibiotics or platelets.  I was only actually sick a couple of times, but felt continuously queasy.  I was discharged as soon as my immunity had recovered to a safe level and I was able to drink adequately.  My appetite remained poor and I was too weak to stand up for more than about 5 minutes at a time.  This lasted for about 10 days, which included Christmas, but after that I started to return to normal.  I am now eating fairly normally, although I eat smaller meals and need to snack between meals (sometimes in the middle of the night), which is unusual for me.  My strength is gradually returning and I am able to do some very light exercise.  The medical team say I have to take it easy for at least three months and in particular to avoid getting cold.  They are also anxious that I do not lose weight, so I have to eat whenever I feel a bit hungry.

I will have checkups every two months from now to monitor progress and I will need to take antibiotics and anti-viral drugs for six months.  Then I need to be re-vaccinated against all childhood diseases.  I am restricted from exotic travel for twelve months.

Overall, the experience is not one that I would like to repeat, but it was not terrible.  I was not in pain at any time and the queasiness was the only real discomfort.  I slept a lot in hospital and listened to the radio most of my waking time.  I did not have the energy to read or even watch TV much as I preferred to have my eyes closed.  I found it difficult to drink water or hot drinks, but apple juice and lemon squash were better.  I did not suffer from a sore mouth at all, which is what causes most patients to have difficulty eating.

The consultant haematologist says that if any relapse is likely to occur it will probably be within two years.  If I remain disease free until then, I am unlikely to have any further problems for a long time.

My experience is probably a best-case scenario, in that I started in good shape and every element of the treatment achieved the hoped-for results.  There are risks involved in the treatment, but the alternatives are much worse, so I would recommend that you go ahead with this regime if it is recommended to you.  Your Dad is relatively young, so should be strong enough to withstand the treatment.

Best wishes, Peter

Hi Peter.

I am so happy for you! Enjoy being in remission, I hope it will never return! Thanks so much for the detailed information really appreciated. I will let my dad know regarding what to expect. My dad has finished the initial 6 chemo's and is due to start the transplant procedure. He is very stressed out. I hope he will be okay...........like you

Dear K_N,

Thanks for your kind words.  Try not to worry.  It isn't a pleasant experience, but your dad will be in good hands.  The medical staff know exactly what to expect and will give him whatever drugs he needs to counteract any adverse reactions.  Staying hydrated is probably the most difficult bit.  He will be given intravenous fluids if he can't drink at all, but try as many different drinks as you can think of to find something he likes.  For me it was lemon squash, which I didn't discover until late on.  I wish I'd tried it earlier.  But everyone is a bit different so you need to experiment.

All the best,

Peter

My partner in crime has had the stem cell transplant which was not nice well the journey from start to this has not been easy, he's had to go through hell and to go through all the child injections, but it does not get easier the treatment with Rituxan which we are on the 4th one which we have 3 years of this I have seen his health go down hill. 

Hi K_N,

Just wondered how your Dad has been progressing.  I hope he got the stem cell transplant under way before the lockdown.

I am pretty much back to normal now.  I'm not gardening 8 hours a day yet, but not far off.  My lymphocyte count is still slightly low, so I'm at risk of viral infection, which means I haven't left home since March.  That's not a great hardship as there's plenty of room in the house and garden and I'm busy with a couple of projects.  My appetite is back to normal and I'm just getting telephone consultations with the hospital.

Best wishes, Peter