Showing posts with label RAvVA. Show all posts
Showing posts with label RAvVA. Show all posts

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!