Category: Transplant Journey

Today, December 13, 2012 is the first anniversary of my stem-cell transplant. I want to thank all my family, friends and the care staff at St. James Hospital for their prayers, love, care and support, without which I won’t be here today.

A very special thank you, to my brother Mahesh, who unselfishly, without being asked, stepped forward to donate his blood. In fact the procedure was harder on him than on me and this may have been over looked by me in my postings. Mahesh had to return again a few months ago to give more blood and on that occasion he had to get a line put in to one of his main veins. Not pleasant! Words just seem insufficient but it is all I’ve got. Thank you Mahesh.

A very special thank you to my consultant, Dr. Conneally too. Many of you will know that I grew up surrounded by doctors and my father, Dr. Cyril Perera, was an exceptional doctor and I would class my consultant in that same category. I am very fortunate to be under her care. She is not just smart (very high IQ) but has that empathy with the patient (high EQ) that makes her an exceptional doctor.

Apart from the one minor setback a few months ago (which I have still to write about), I am making good progress.

My BCR-ABL count (cancer cell count) is now down to 0.003. This is on a log scale and is a pretty low number getting close to insignificant. The next step is to find out if it is the medication (Dasatanib) or is it the Lymphocyte infusion, i.e. Mahesh last donation of blood, that is helping me win this battle. Ideally, I should stop taking the drugs and start fighting the cancer with my blood. These drugs all have side effects and long term use of them can damage your liver and/or kidneys. The low BCR-ABL count is also good news.

While writing this blog, I just remembered that the doctor MAY have reduced my Dasatanib dose by half and in my excitement of the news, I have yet to do this and that was two weeks ago. Wow, all I can say is thank God for blogs, but she won’t be a happy camper as we were going to test the BCR-ABL count next Tuesday to see if it continues to remain low. I need to get a grip on myself. Pat usually comes with me for my visits, but on this occasion she was not there.

The third bit of good news is that I have started my inoculations. Since I’ve had a system reset, I am back at ground zero. I have to start all the vaccinations from scratch. These are the vaccinations for Diphtheria, Tetanus, Polio, Whopping Cough, Haemophilus influenzae type B vaccine (Hib), Pneumococcal Disease (PCV 13), Meningitis (ACWY), another Pneumococcal Disease (PPV23) and Influenza (flu jab). I will get these over the next 6 months. Twelve (12) months later, I will have to get the MMR. They avoid giving the MMR until later as it is a live vaccine.

Were you aware that babies get all these vaccines? I had to get three separate injections last week and had to provide three limbs for it! Two hands and a leg! Make sure to warn me if you know anyone with Measles, Mumps, Rubella or Chicken Pox. I have to avoid contracting those childhood diseases.

A good way to end this blog is with the words from Ecclesiastes. “There is a time for everything, and a season for every activity under the heavens; a time to weep and a time to laugh, a time to mourn and a time to dance. Today I laugh and dance with you!

That’s all for now folks. The next post will be about the ‘derailment’, the minor set back last month.

The celebrations had begun as we thought it is all plain sailing from here. We were on the home stretch we all thought. Well, the cancer cells said otherwise; “you may have won the last battle but the war is far from over”. Today, Thursday, August 16, 2012 I had a DLI. A topup! DLI stands for Donor Lymphocyte Infusion.

Why? Because my BCR-ABL count has gone up again. BCR-ABL is the cancer cell. The count is still at very low levels but it is the trend that seems to be worrying my Consultant Haematologist. My BCR-ABL reading before the transplant was 47 and soon after the transplant it dropped to 0.04. It then steadily rose to 0.1, 0.21 and then 1.04 at which point I went on Dasatanib, a cancer drug. Dasatanib is part of the tyrosine kinase inhibitor family of drugs. They help to break down the BCR-ABL (cancer) cell so that the blood stream can then attack it. If you were in the chronic phase  (early stage) of Chronic Myeloid Leukaemia (CML), you are treated with these tyrosine kinase inhibitors. They help to control the growth of cancer cells.

Dasatanib helped to bring down the BCR-ABL (cancer cell) count to 0.1 (from 1.04). However, over the last 8 weeks it has started its slow rise again, this time from 0.1 to 0.16 and then 0.55. They measure these on a logarithmic scale.  I am not sure I fully understand the implications of using a logarithmic scale.  When we are talking of such great variances, I can see why they would resort to using a logarithmic scale. To fully understand its significance, I’ll have to go back to my Consultant.  What does it mean to have readings that show 47 (before the transplant), 0.04, 0.1, 0.21, 1.04, 0.1, 0.16 and 0.55 in a logarithmic scale as opposed to a liner scale?  My Consultant says that it is only a molecular relapse as the blood counts are normal.

Donor lymphocyte infusion is basically getting more of my brother’s blood cells. The idea is that lymphocytes from the original stem cell donor (my brother) are given through a drip, after the transplant, to augment an anti-tumour immune response (i.e. fight the cancer cells) or ensure that the donor stem cells remain engrafted. These donated white blood cells (lymphocytes) contain cells of the immune system that can recognize and destroy cancer cells.

The goal of this therapy is to induce a remission of my cancer by a process called the graft-versus-leukaemia effect (GvL). The donor blood cells can attack and control the growth of residual cancer cells providing the GvL effect. It is hoped that the donor lymphocyte infusion will cause GvL and lead to a remission of my cancer

Usually patients might require standard chemotherapy, to reduce the amount of cancer cells they have prior to their donor lymphocyte infusion.  In my case, my blood counts are normal and therefore there was no need to go for chemotheraphy. This is only a small setback.

In the past,  the only treatment option that offered relapsed bone marrow transplant (BMT) patients hope of a cure was another bone marrow transplant. However, the risk of serious, life-threatening complications after a second BMT is great. One strategy of managing relapse, donor lymphocyte infusion, might eliminate the need for a second BMT in some patients.

It is probably not entirely correct to say that I had a DLI today as what I got was a combination of Stem Cells and Lymphocytes. Today I got 0.5 l. They also increased my dose of Dasatanib from 50 mg to 100 mg. They will look for donor lymphocytes from Mahesh, so that they can give me just the lymphocytes. Unfortunately, they will have to do the virology tests on Mahesh again before they take more cells from him. This time he will not need a GCSF (Granulocyte colony-stimulating factor) prior to donating the lymphocytes. What this means is that it won’t be as uncomfortable as the previous time when he donated the stem cells.

They will test my BCR-ABL (cancer cell) count in 8 weeks’ time and if there is no improvement I will get a second DLI. The next time it’ll be1.0l (double the dose) and if this does not help they will increase it to 5l (5 times the dose) after another 8 weeks.

It is possible to have complications after a DLI. The main one is the famous ‘Graft-versus-Host’ (GvH) disease which I’ve managed to avoid up to this point.

The good news is that this is only a minor setback.

Anyway, next Saturday, August 25, is my big day. Walking Lesley-Ann down the aisle at Foxrock church and Shereen will be singing Ave Maria. I can picture it all and it’ll be a great day for celebration. My next post will be my speech!

That is all for now folks!

Day 144. I haven’t visited my blog in many weeks. ‘ All things must pass’ and yes I have made it to the other side. Did you know that this phrase comes from the bible? “see that ye be not troubled: for all these things must come to pass” This series of blog posts have come to an end as well. This is my thank you and goodbye for now, posting.

I am doing very well. I am no longer on the cyclosporin. The drug that is an immune suppressant. My regular visits to the hospital is now once every three weeks. My system has been ‘reset’! It means that my immunity is still on the low side. Over the next 18 months, I will be getting all the vaccinations to protect me from the usual childhood diseases. I am still in semi-isolation but have started going out for a few meetings, though I tend to avoid crowds.

I was back at church was over Easter for the first time in four months. I sat in the back away from the crowds and avoided shaking any hands during the ‘kiss of peace’. We have a tradition on Christmas Day and Easter Sunday, when the men are invited to go up to the altar to sing the penultimate hymn. When my friend, Ray, started this tradition, about 15 years ago, we used to have about 10/15 men go up, but now well over 60 men go up to sing the penultimate song. Follow this link to get a feel for what it is like, this was Christmas 2011 while I was in hospital; http://www.youtube.com/watch?v=QPcZmTVvAak. I did not go up to sing this year. Ray dedicated the song, ‘Amazing Grace’ to welcome me back and telling all that song represented my journey. How true! Even writing about this, makes me emotional! It was a very moving moment to hear the words “Through many dangers, toils and snares, I have already come; Tis Grace that brought me safe thus far
and Grace will lead me home”

It was over a year ago, Monday April 11, 2011 that I was diagnosed with CML (Chronic Myeloid Leukaemia) and then on Tuesday December 13, 2011 I underwent a bone marrow transplant, a ‘reboot’ of the system. The last twelve months were tough, probably harder on Pat than on me. We were very blessed with the help and constant support we got from all our family and friends. Thank you for this ‘Amazing Grace’.

There isn’t much more to write about this particular journey of mine. I found that writing this ‘blog’ helped me a great deal in remaining positive. I have no doubt this positivity helped me in my recovery.

The BCR-ABL count, this is the cancer cell count dropped to a very low level after the bone marrow transplant. It was at 0.02. Then it started to go up again, first to 0.1 and now it is at 0.2. Ideally, it should remain below 0.1. These are still very low levels. One of the reasons they took me off the immune suppressant is to try to get my blood to fight this cancer. The challenge for any cancer patient is the worry that the cancer will return. That is for another day, another blog and if it does, I will have to deal with it. In the mean time, it looks like, I have won this battle!

I recently posted this on my facebook page.  My son Amal is running for his father!  There were many ‘silver linings’ in the my cloud and this is one of them. I am a proud father! Thank you Amal. Please do support this cause!

http://www.mycharity.ie/event/amal_perera_leukaemia_run/

Please feel free to suggest a new topic for my next series of blog posts!

That’s all for now Folks! Till we meet again …….

Day +82. It must be over 3 weeks since I last updated my blog. Today was a red letter day. Though, it is fair to say that there have been a few red letter days since my last update.

I drove to the airport (and back) this evening, the first time since I went to pick Lesley-Ann from the airport on the 1st of December just before going into hospital. My brother Mahesh (Donor) was over for the week-end to see how I was doing and I dropped him off at the airport a few minutes ago. This was also the first time I am seeing Mahesh since the transplant. Today, March 4th, is also my father’s birthday.

I am doing very well. I have managed to overcome my fatigue. My ‘Hickman line’; the tube that was connected to one of my main veins, was removed last week. There was some discomfort when removing the line (it took about half an hour) but it wasn’t painful. They have also started to reduce my cyclosporin. It is all going in the right direction.

Mahesh sent me a link to CML (Chronic Myeloid Leukaemia) that I found very useful. It is called; Newly Dignosed – First Steps.There is an excellent booklet called the CML Guide which may be downloaded as a PDF. There is also a CML Tracker application as well that looks good. I will try it out. This is a Canadian website and it is interesting that they encourage cancer patients to research their illness. They suggest the following:

1. Keep all appointments with the doctor and be sure to talk openly about any fears, concerns or side effects experienced.
2. Be an information seeker. Learn about your diagnosis and the most current treatment.
3. Talk with family and friends about how you feel and how they can help.
4. Contact your doctor about tiredness, fever, pain or sleeplessness so that any problems can be addressed early.
5. Get medical advice if you have prolonged changes in mood, feelings of sadness or depression. Depression is an illness that should be treated.
6. Learn about your insurance coverage, healthcare facilities and available support for you and your family.
7. Remember that the outlook for people with blood cancer is continuing to improve and new treatments are on the horizon. Researchers are studying new blood cancer treatments in clinical trials for patients of all ages and in all treatment stages.

The only problem with being an information seeker is that sometimes the message is not that palatable! Another article on CML, beyond the Basic, say the following; “The only cure for someone in the ‘Accelerated Phase’ of CML (this is where I was) is a ‘Stem Cell Transplant’ and goes on to say that disease-free survival falls to 30-40% for these patients”. I thought I had better odds! Let us hope that I fall into the 30% bracket. Based on my track record so far, it looks like I am in that 30% category. Anyway, no point worrying about that now. Cést la vie!

Shereen took part in a Japanese Speech Contest on Saturday and did very well. I was not able to go to it but was able to see her performance on tape. When you watch a ‘recording’ it is one dimensional in that and you cannot absorb the atmosphere. This reminds me of what Pat showed me last Tuesday while we were in hospital. She was reading ‘Have a Little Faith by Mitch Albom’ and she showed me this story from it.

“A little girl came home from school with a drawing she’d made in class. She danced into the kitchen (I can picture Shereen here!), where her father was busy at his computer.

“‘Dad, guess what?’ she squealed, waving the drawing.

“Her Dad never looked up.

“”What?’ he said, still finishing off his emails.

“‘Guess what?’ the child repeated, waving the drawing.

“‘What?’ the Dad said, still reading his emails.

“‘Dad, you’re not listening.’

“‘Darling, yes I am.’

“‘Dad,’ the child said, ‘you’re not listening with your eyes.’”

We may be in awe of watching 3-D (now 4-D) movies but yet fail to recognize the ‘God given’ benefits of 3-D by using all our senses at any given moment to the get the maximum benefit out of a situation. I am learning – slowly!

That is all for now folks!

Day +54, I am getting closer to the first hundred days. It has been tough going for the last couple of weeks and it seems like I am battling with my mind. Just trying to deal with fatigue. I don’t feel like doing anything. I must find a way to handle this. The blog was a great way to keep me occupied when I was in hospital and it kept my mind alert. Somehow, I haven’t been feeling up to writing a blog. Anyway, here I am, let me look into the future as I continue to battle with my own demons! Even Pat has got into reading my blog and misses it. Every morning she says, ‘Why don’t you write something today?’. Amazing statement from Pat, who is not a great fan of computers.

It has been an eventful few days. I got a bad dose of diarrhoea last Friday. This is one of the symptoms of the Graft-versus-Host disease. I was in touch with the hospital to see if I should go in, they did not seem as concerned as I was. Probably they wanted to rule out a few things first, such as a flu bug. The last thing they want is to have me come in and infect other patients. The other possibility was food poisoning, which I thought was highly unlikely as Pat cooks my meals fresh every day. Anyway, the hospital said, let us wait and see for another few hours and if I got worse, then to come in. I felt better on Saturday and the crisis was under control. It is amazing how much power your mind has over your body. I was convinced that it was GvHd and the fear took control of my body and put me out of action for the rest of the day on Friday. I am convinced that we do need to find a way to control our minds.

By an amazing coincidence, I came across this article in the Reader’s Digest (February 2012). This goes back to one of my original postings when I spoke of the ‘law of attraction’. The challenge for me is to figure out if it was my Guardian Angel or the ‘law of attraction’ that brought me this article. In itself it does not matter too much as long as it helps me. The article is called, ‘Change your Mind, Change your Future’ written by David Shephard.

A recently published report says that 38 percent of Europeans are suffering from some sort of mental or emotional disorder. This is over 1 in 3 people suffer from this disorder. If I read this a few weeks back I would have laughed it off as I am not a great believer in mental disorders.

I also didn’t believe that the incidence of cancer was as high as it is reported. I used to laugh at my sister-in-law, who is a Consultant Pathologists, when she was very concerned about carcinogenic substances in our food (cancer causing substances). Well, here I am now a cancer patient. Can you believe that 5 out of the 6 of my family have had a brush with cancer? Being a cancer patient is not a great place to be in, as it is a ‘life sentence’. Going through cancer treatment is tough, but once the battle in won, unfortunately, it is not the end of the war. If you get cancer, then you have to deal with it.

The best is to avoid getting cancer. It is a known fact that smoking can cause cancer. The liver is one of your lines of defense and heavy drinking damages your liver. The detergents we use at home are probably carcinogenic. I was surprised to see the cleaners use Fairy Liquid (washing up liquid) to clean the surfaces at the hospital and not Domestos (Bleach). A good healthy diet is recommended with fruit, fibre and vegetables (avoid sugar). All this is to ‘close the barn door before the horse bolts’! This was a digression from my original thought process, but this has been in my mind for some time since I got sick. When you are sick, you long to be well again.

Back to the ‘Change of Mind’ article. The article talks of developing a few techniques for controlling your mind and therefore your life. Your brain runs two minds; the conscious and the unconscious mind. Your conscious mind is the one you feel with, and where you get intuitions and gut instincts. I for one, is overly reliant on my conscious mind. It is our unconscious mind that holds the power to create our dreams and this is news to me! The truth is that we require both minds. The article talks about the conscious mind being the captain of the ship and the unconscious mind being the crew. The unconscious mind’s job is to give you something to focus on. The unconscious mind can’t process ‘negatives’ e.g. If I ask you not to think of a blue tree, what do you think of? A blue tree! The problem is that culturally we’re conditioned to focus on what we don’t want.

Train your brain. You need, literally, to insert “memories” of what you want to happen into the future. Your unconscious mind needs to know exactly what you want and when. Your conscious mind’s job is to decide how to get there.

I think I will look up on David Shephard and will keep you posted on what I learn here. He says that the most important thing to realise is that nothing is just the way it is – you have the power to change the meaning of the past and create your future the way you want it.

That’s all for now folks!