Thursday, 1 October 2015

Future in my Lord's hands

Psalms 62:1-2 (NLT) - I wait quietly before God, for my victory comes from him. He alone is my rock and my salvation, my fortress where I will never be shaken.

Most of you all have followed me on my journey in battling cancer. It's over 3yrs now and the fight continues. For those who don’t know, and have missed stuff, thought I write a post about what's happened so far, and what next...

I was diagnosed with AML (Acute myeloid leukaemia, a type of blood cancer) in Aug 2012. I went through 3 cycles of high dose chemo and got back to work rather soon (within 4 months). Unfortunately, it relapsed again in July 2013, and the plan was for me to have 1 high dose chemo, followed by a bone marrow transplant. But as they did not find a 10/10 donor for me, I went through another 2 cycles of chemo and then had an autologous transplant (wherein my own stem cells were harvested, made sure are cancer free and then given back to me). This was in April 2014. It took a long while to recover, but I started work slowly in October 2014, and was making a good recovery. Unfortunately, I again relapsed in Feb of this year…

As there were no standard treatments for me, I was put on a 6 month trial of RAvVA (My last post has more details, click here), where lose dose chemo is administered, and the hope is that it affects only the cancerous cells. It was a 7day course each month, and I tried working in-between whenever possible. After 3 cycles (3months), things looked good. But from tests done in mid Sept, the consultant has said that the treatment is not working and the blasts cells (Leukemic) are increasing. I’ve been having severe body pain for the last few weeks now, specifically in the bones, and they are doing further tests to determine the cause.

At the moment, clinically the future is looking dim, but I’m praying for a miracle and things turn around. A slight chance of another treatment is that of “antibodies”. It’s so new that only 15 people have gone on it so far. So no data about outcomes. They say it was successful on mice in the lab :) So that’s whats been happening the last 2 weeks, series of tests and also checking if I can be eligible for this antibodies trial. It's just phase 1 of trial, where they are still trying to determine the right dosages and if it benefits patients.

Physical, I’m very weak and as the neutrophils counts are low, I avoid going out much. Just Hospital runs. Hence haven’t been able to make it to office for a long time now and most likely will be going on long term sick leave. I'm at my weakest now, and so I rejoice because when I am weak, HE is strong. Only a miracle can save me now, and that's what we are praying for. Have submitted my life in His hands and waiting for my Lord Jesus Christ.

That’s it from me. But before I close, let me once again call out the ‘Stem cell donor’ bit. For those who still haven’t registered, it’s a noble cause. It’s just a bit more than regular blood donation, IF you are ever found to be a match. The initial step is to register only (Fill a form and give a cheek swab). We have had many donor registrations drives in UK, India and US too, and it's great to know that few individuals have already been contacted to be a donor and save a life. You can always go online and order a kit for free: http://www.deletebloodcancer.org.uk/en/register-now
Or http://www.anthonynolan.org/

So till my next post, take care and keep praying for me.

God bless...

Friday, 3 July 2015

Fouth treatment cycle over

I'm back fairly quickly this time... :) Firstly, because I really want to make it a point to blog, BUT more importantly, because by God's grace the 4th treatment cycle got over without any major hurdles. I have some tooth trouble this time, but it's being treated with anti-biotics. As I mentioned earlier, I started the 4th cycle on 22nd June and finished in time for 30th June. Got back home on Tuesday night itself... Wednesday was a bit tiring and it's taken a couple of days to feel normal :)

Really need to thank the nurses who take care of me and so many others. Doctors and consultants too are really helpful. It's because they do their work diligently that we are able to lead normal lives. I continue to pray for them - all the health care people around the world... May God continue to guide them and lead them and work miracles through them. Amen!

Nothing much to write today, so maybe I'll give some more details about the RAvVA treatment. As mentioned on the last post, its a different type of low dose chemo, less intensive. The initial trial is of 6 cycles (1 month each), and they assess how effective the medicine has been, and if it would be beneficial to continue, or wait and watch. For this RAvVA trial, you get randomized to have just the subcut injections OR subcut injections+oral chemo capsules. Again, as mentioned, traditional chemotherapy kills all cancerous cells, but at the same time kills good cells too. With this trial treatment, few good cells are lost, but the main aim is to try and curb the growth of cancerous cells and thus make more room for normal cells to grow.

The subcut injections are called Azacitidine - subcut meaning injections given into fatty issue. Like the stomach, back of your upper arm, thighs. The first 2-3 cycles this was a big problem for me, as I had no fat... :) The injections sting a lot and the pain remains for few days. :( so more the fat, the better. Azacitidine has been approved for used with Myelodysplastic Syndromes (MDS) patients and it's being trialed for AML now.

And then I got randomized to having the oral chemo too, which is a drug called Vorinostat - I need to have 3capsules morning and night time (12hrs apart) for 9 days. I start taking it on day 3 and it completes along with the 7 injections (because the injections are not given over weekends, got it?).

Apart from chemo, I have to take Septrin (anti-viral) and Voriconazole (anti-fungal) for the chest infection I had in April/May. Along with these, there are the usual prophylactic meds (Aciclovir, Ciprofloxin, Lanzoprezole) and nausea meds too. This time I was on 3 different nausea/vomiting drugs, so just vomited twice in the whole cycle, which is a really big thing for me, as vomiting is the main side effect I have. The prophylactic meds are continuous - they say Aciclovir is for life and the other 2 can stop when counts improve. Nausea meds I have only while the injections are on (maybe a day or two after incase not keeping well). Septrin and Voriconazole will continue for sometime, as the chest infection was pretty severe.

So that sums all the meds that I am on... :) I need lots of water unlike some who can take a small sip and have their meds. So I get full drinking water while taking these tablets! With all these meds which are meant to help me, if you start reading about possible side effects, it's all God's grace...! I seldom look at the side effects and Ancy does not look at them at all. Why worry she says... I don't get worried, but I can't be bothered. It's all in His mighty hands and I take each day as it comes...

I'm back to work too btw, inbetween treatment cycles, and the team is very co-operative. So I don't get any urgent time bound stuff to do. But that does mean I get stuff that no one wants to do... hehe... :) Cisco folk (especially my colleagues), no offense ok... I really appreciate all the help, patience and support. It helps keep my mind active and I don't forget things... And doing these odd tasks means I get to work on various different products/protocols, which only enhances my overall knowledge. In the last few weeks, I got back to SNMP stuff after years, installed and configured an Oracle DB for the first time and got vSphere Update manager (VUM) integrated with the DB (refreshed ODBC stuff) - so all good... Cisco rocks!

Anyhoo... this was supposed to be a short blog, and look what I've done...! If interested in the RAvVA trial, there is loads on google and you can read more here, about the positive signs...!

Keep praying for me and all those who need complete healing...

God bless!

Sunday, 21 June 2015

The roller-coaster ride continues

Hello Everyone,

Firstly, apologies for the long delay since the last post. This post has been long pending, and finally I sat to write and update you about my life...

Being told I had cancer was a BIG shock back in 2012, then there was even greater disappointment when it relapsed in 2013 and the reason for this delayed post is that I had a second relapse earlier this year. Yep, my counts started dropping towards the end of Jan, and there were more tests done through Feb, and they finally confirmed a relapse!

Needless to say, there were so many mixed feelings, that it was overwhelming...!!! Being me, I never could express it well, but somehow by God's grace I've held on. Everyone around have been encouraging and very very supportive, but for me, enduring this isn't easy to say the less... :) Thoughts do come as to why I am suffering like this, going back and forth with the illness - BUT with the little shaky faith I have, I try and cling onto my Lord's great faithfulness...

My dad mentions this verse, and it relates so well to the phase I'm going through...
            "In the multitude of my thoughts within me, thy comforts delight my soul." Psalm 94:19

So, 2nd relapse... Doctors said I have to have chemotherapy again, followed by another transplant. The thought was totally unacceptable...! Again 2-3 courses of high dose chemo - my body would just not cope! Then a transplant, that too I don't have a full 10/10 match. So it would be a cord-blood or haplo(50-50 match with parents) transplant. I was praying for an alternative... And that's when they told me I could be eligible for a trials treatment called RAvVA, where in I get low dose chemo and it would not be as intensive. It needed a minimum of 6 cycles (1 month each), wherein I get sub-cut injections for 7(working) days and then a break until the next. I didn't have to be hospitalised and could possibly work the rest of the time during the break period.

Traditional chemotherapy aims to kill all cancerous cells, but at the same time kills good cells too. With this trial treatment, it tries to curb the cell cycle of cancerous cells and thus make more room for normal cells to grow. In short explanation... :) After consulting with family and other specialists in the field, we opted for the RAvVA treatment. And it started in March earlier this year. As my neutrophil counts had completed dropped, the first two cycles were not easy. I fell ill with high temperature (neutropenic sepsis) and was admitted in hospital 3 times. There was pneumonia and further lung infection and all...

Anyways, by God's grace, I got through all that and was able to be at home for 3-4days before the start of the 3rd cycle. The 3rd cycle went well, and after the 7days of injection, I was able to get back home. And have been at home for the last 2 weeks. Tomorrow I start my 4th cycle, and hence was desperate to get this blog out and update you all...

The last two weeks, I was able to eat well and put back some pounds, and get fit and ready for the next cycle. Although its low dose therapy, I still have some nausea and tiredness, so do loose weight. That's why I have been eating as much as possible... :) By God's grace, I was able to work too, and thanks to a very supportive team at Cisco, I was able to work in my time and complete the tasks given to me. It's a real blessing to be at #Cisco and have the flexibility to work from home and have the full support of my manager (and higher up) and my team amidst these difficult times.

So that's about it guys... I summed up the last 5 months quickly, to update up you all that I am doing well. I believe that there is a purpose for these tough times, and believe there are much better times ahead. Our Lord Jesus has special plans for me... I pray that he uses me for the extension of His kingdom... I though so unworthy, still am a child of His care! Thanks to you all who have been praying for me. It's these prayers which have kept me strong!

Love and regards to you all...

God bless...

Thursday, 1 January 2015

Blessings from above

Hello Everyone,

This post should have gone out a couple days back, but never got around to doing it... :) Couple days back meaning 30th Dec... Marking our 5th marriage anniversary...!!!

Of these five years, the last 2 years have been very different to what a married couple would expect. Needlessly to say, it has been a roller-coaster ride, but if we really look back closely - even through the rough times, our Lord Almighty has guided our paths and we've seen miracle after miracle... It has made us stronger and more resilient. And not just us, we have seen our family and friends grow in faith too, as they all lend us a helping hand.

My wife Ancy, has gone through so much. At a time when she should have been enjoying the initial years of marriage, she had to support me. If my OCD wasn't bad enough, she had to care for my needs too. My parents have had enough of me during my childhood days considering what a brat I was, and instead of relaxing now, they too had to care for me...!!! Everyone of my family members have lend a helping hand during these times, and its a true blessing. Here in London, so many of our friends have helped us in so many ways. And around UK and in different parts of the world, so many helped organise stem cell donor registration drives... So a BIG THANK YOU to you all...!!!

I'm glad to tell you that from the drives done, 5 individuals have already been identified as matches for others. It's such a wonderful thing, to know that the Lord used us to find donors who will act as life savers. So we shouldn't stop conducting these stem cell donor drives. We need to continue to raise awareness and get more and more people to register as donors.

My blood counts have been stable for the last 3 months now, and I haven't needed any transfusions, which is simply awesome. The counts are still climbing gradually, and need to get into normal levels, but we're praying this happens soon. We have set our targets, and thank God everyday for the counts he will give me... The last month, thanks to the climate change, I've been down with cough and cold - but by God's grace have been managing well. Seems like everyone in London is coughing... :)

As I start 2015 now, I believe that the Lord has special plans, and His plans are better than anything we can ever ask and think about. I submit myself to HIM, and thank him for all the many good days ahead... I thank HIM that he will use me as an instrument, so that His will be done.

God bless you all, have a wonderful 2015, filled with HIS choicest blessings...