Life's Journey with Multiple Myeloma

The reason for the delay in writing this latest post is because Sima insisted that I wrote it this time. She said that you all wanted to hear from the “patient” and since the patient is a very busy man, it has taken me this long to finally put this together! Of course now I will get hell from Sima, because this implies she is not busy … oh well, you just can’t win …

Well as Sima had mentioned in the last post, we are one year on – one year stronger, one year more determined and one year closer to the cure. It’s been hell of journey both emotionally and physically. We have learned a lot in the world of Myeloma, the body is an amazing vessel and so interconnected that when something breaks, it has a cascading affect. We experienced that the hard way unfortunately – first the myeloma, then my thyroid.

I recently went to Atlanta to meet with Dr Lonial. During this visit he talked about increasing the number of tests that we conduct every month. His rationale was that with one test, the moment the numbers start to change, we will go into panic mode. If, however, we add a couple of other tests and those numbers remain pretty constant, we may put it down to an unusual reading that particular month. Of course, if all the numbers start to change in all the tests, we can definitely go into warranted panic mode and start the treatment process again. Well, anyway, it made sense to me so I have added two more tests when I visited Dr Z last month.

Latest results have indicated that I am still in CR. My first test was to measure my M-protein through blood work which remains undetectable. My second test was a 24 hr urine (yes, I had to pee in a bucket for 24hrs again!) was normal – no high amount of protein and my third test was a free light chains test which is a very sensitive test to determine if the myeloma is present. This came back normal too (they measure the ratio of the kappa/lambda free chains for those medically inclined).

Today, I met with a new doctor, Dr Ansara, who came highly recommended from a couple of friends of ours. She’s an endocrinologist who will track and look after the thyroid issue going forward. Luckily Dr Z has been kind enough to order TSH tests every month since the thyroid surgery so I have built up some history on how my TSH levels have been changing. Dr Ansara confirmed that I have an under-active thyroid now (since I only have half, the likelihood of this was pretty high). I have been put on 75 mg of synthyroid. Dr Ansara also ordered an ultrasound and more blood work for our next visit in two month’s time. We will build up a profile and then adjust medication going forward. The ultrasound will make sure we monitor the right side of the thyroid to ensure it remains healthy and without issue.

Work remains insanely busy, not complaining at all though. The next couple of months should be full of festivities and laughter with my birthday, Thanksgiving and the holiday season just around the corner. I can’t believe we will be in 2010 in two month’s time!

Well that’s it folks for this month. I personally want to thank every one of you that have contributed and kept our sprints high with your comments, emails, phone calls and most importantly, your prayers. We couldn’t have done it without you.

Wishing you good health.

Can you believe it? It’s exactly one year from THAT day. The day that changed our lives, the day when we were thrown into a world that we didn’t even know existed(!) – the unfortunate world of Myeloma.

It’s certainly been a long journey and it’s not over yet but we’ve definitely learned a great deal. I remember saying to myself last year that this is a test and we will grow stronger from it – we did. Not only did we become stronger as individuals but the bond between us grew stronger too.

As I reflect I think the main thing that has changed is our attitude towards life. We definitely do not take things for granted any more. We really are living life to the fullest and are enjoying every precious moment with each other, our two sons, with our extended families and our friends. It’s sad that it takes an unfortunate event to be the catalyst in making you realize that life is too short. We all say “life is too short” but how many of us really practice it?

Lance Armstrong mentioned something similar in his book “Journey Back to Life” – he said that after he was diagnosed with cancer, he saw the world around him through new eyes. I couldn’t agree more with him now …

Today, we got Alpesh’s blood results from Dr Z and the good news continues – everything is normal. Alpesh is in Boston this week for a conference – this time last year we didn’t think he’d be traveling ever again. He’s certainly come a long way and fought an incredible battle.

Since there is no cure at the moment, the battle will continue but we do thank you for taking the journey with us ….

[By Sima]

We went to see Dr Z last week and he confirmed that with all the results we have had so far i.e. no M spike in last few blood reports, no monoclonal cells in both the bone marrow and sacrum biopsies, Alpesh is officially in complete remission (CR). Of course, for how long, no-one knows or can predict.

Currently, Alpesh is taking no medication (no maintenance drugs). If the myeloma does come back, we should be able to detect the first signs through on-going monthly blood work.

We’ve also scheduled to meet with Dr Lonial in Atlanta on September 22nd to give him an update on the situation and see if he has any thoughts on what we should/could be doing to keep him in remission.

What can I say? It was our goal to get Alpesh to complete remission so through the power of prayer, positive thinking, continuous tenacity, endurance, strength of character and determination, he’s reached that goal! We all knew he would … but we also know that there’s no way we could have got here without all of you supporting, guiding and encouraging us….

So what now? Well, we’ve got another goal of course(!) …. how do we keep him in CR …?

[By Sima]

The results came in and … GREAT NEWS! The sacral mass came back negative, no suppuration or neoplasm was found. We are so relieved!

We meet with Dr Z next week to discuss next steps in terms of treatment. In the meantime, we’ll enjoy this marvelous piece of news.

Thanks for all your prayers.

[by Sima]

After traveling to New York, then London, Alpesh is back in New York this week. He’s feeling great, still full of energy and hasn’t lost his sense of humor even when the going gets tough. He has a few other trips lined up for the month of August, one of them includes me and children so we’re happy about that!

We went to see Dr Z last Tuesday and Dr Z even commented on how well Alpesh looked – of course we wouldn’t recommend a round of chemo to improve anyone’s looks(!), but I guess Dr Z is comparing him to the Alpesh that came to see him in October 2008 with a limp and intense pain in his back – he’s definitely in better shape than then.

We had to reschedule the MRI due to various reasons and it is now scheduled for next Monday, July 27th. Alpesh is currently off all chemo drugs until Dr Z gets the results of the MRI to determine if he should continue with the maintenance program (21 days on and 7 days off) or take a break from the drugs.

The main purpose of the MRI is to evaluate the progress in the sacrum. The last MRI indicated that the plasmacytoma had shrunk but the lesions in that bone were still fairly large and had not improved significantly. We are hoping that the monthly Zometa infusions he receives are helping to heal these bones but obviously the damage so far has been severe.

The results of the blood work taken last week were normal except that his TSH levels are a little high, obviously due to the removal of half of his thyroid. Dr Z said that his body is probably still adjusting and the levels may stabilize but he recommended seeing an endocrinologist in the next month or so to determine if Alpesh will need medication or not. Either way, he’ll need to see the endocrinologist regularly throughout his lifetime. Just another doctor to add to the mix …

Finally, a quick thanks to you all for your words of encouragement throughout, we love reading all the comments you leave us on this blog or the messages you send to us individually – it really means a lot to us.

[by Sima]

Well we needed some so we are pleased to share it – the pathology report came back and the nodule in the left thyroid was benign! Thank goodness we only removed the one side and did not follow through with standard procedure which would have been to remove the whole thyroid!

Nevertheless, we would have had to remove this at some stage as benign tumors can sometimes become cancerous and with all that’s going on, we probably wouldn’t have left anything to chance.

Apart from being a little lethargic, Alpesh feels great and of course very relieved that he can put this to one side and not worry about it any more.

Nothing else to share except that fabulous piece of news. Have a wonderful weekend – we will certainly be celebrating!

[by Sima]

Dear Family & Friends,

Firstly a big thank you to you all for being there during this journey. Your words of encouragement, wisdom, advice, prayers, positive energy and good wishes have been the backbone to our strength throughout.

With that in mind, I have some unfortunate news to share. In his Almighty wisdom, upstairs has decided that the multiple myeloma was not enough and that we are strong enough to handle yet another hurdle in our lives.

Here’s the background:

During one of the pet scans in January to determine hotspots, you may remember I shared that there were no hotspots in the plasmacytomas which was excellent news, however, they did detect some activity in Alpesh’s left thyroid gland. They put this down to the medication since his body was “off balance” and the thyroid was probably just inflamed and “complaining”.

Although it was always at the back of our minds, we decided to accept this explanation. Anyway, as you’ve probably guessed by now, we did do further tests on this recently including an ultrasound which showed a 1.3 cm nodule in his left thyroid lobe. We followed up with a needle biopsy which showed some abnormal follicular neoplasm cells (in his case the “Hurtle cell”). The Hurtle cell is not necessarily cancerous – it can be benign or malignant and the odds of it being malignant are 15%-20% (so some good news there). However, the thyroid gland is unfortunately an area whereby removal of the affected lobe is the only way to determine whether it is malignant or not.

We just met with Dr Robert Smallridge at the Mayo Clinic in Jacksonville yesterday and he confirmed that Alpesh will need to have at the least the left lobe of his thyroid removed (normal practice would be to remove the whole gland). The left lobe will then be tested and if it is malignant, Alpesh will need to go in for a second surgery to remove the other lobe. If however, the left lobe is benign, Alpesh may be able to manage perfectly well on half a thyroid (right side) without any medication.

If we end up having to remove the full thyroid, Alpesh will need to take medicine every day for the rest of his life so that his body can do the job of the thyroid.

All in all, Alpesh has taken the news well. In an ideal world, we would not be dealing with Multiple Myeloma let alone this but the world is not ideal and Alpesh is handling this with the optimism, fighting spirit and positive attitude he is famous for. He is in full control as usual, telling the doctor who will perform the surgery (Dr Kiran Tipirneni in Winter Park) that he does not want full removal of the gland per normal practice, he wants to do half and then evaluate from there. Makes perfect sense and the doctors are all on board and willing to work with us.

My family/friends always ask how I’m handling this, so I’ll answer that question before I’m asked. After the initial anger/shock/disbelief that there is yet another issue on our hands, I’ve concluded that it’s just another test from God. I’ve powered myself with knowledge on the thyroid and, with Alpesh, will do battle once again.

Scott, one of Alpesh’s “Myeloma” friends who actually had half of his thyroid removed also, encouraged him by saying that “The thyroid issue is a walk in the park compared to the Myeloma”.

He is so right and Alpesh has knocked Myeloma down to its knees and is in remission. Therefore, we can definitely get through this one!

One last thing … I wanted to share the below which was sent to me by my friend Linda Bauman. This message is so profound that my mind goes back to it many times when the going gets tough.

Please continue to keep us in your prayers.

That’s my sermon for today:)

Thank you!!

[by Sima]

I got a call from Dr Z yesterday regarding the results of my blood tests taken last week.  The results are very positive,  my M-Spike, one of the key markers that are monitored for Myeloma is down by 75% (from 2.07 to 0.5) after one complete chemo cycle.  The question now is can I reduce this further or even maintain these numbers?  I am sure Dr Z will order the same test after the end of the 2^nd cycle.

M-Spike = 0.5 down from 2.07 (oct 28th)

IGG = 1405 down from 3020 (oct 28th)

B2MG = 1.72 up from 1.51 (oct 8th)

LDH = 132 down from 181 (oct 28th)

I popped in to see Dr Z on the way to the IV infusion today regarding the rising B2BG (beta-2-microglobulin) and he wasn’t concerned at all, he said it was a soft test and in my case, the number was pretty small from the begining and therefore not to worry.  The M-Spike is the main one to watch.  I will continue to watch the B2MG number, ideally would like it go down like the rest of them.

At 6am this morning, the home phone rang, then my cellphone, then the home phone again .. it was relentless!!  The bells, the bells J   Sima and I were fast asleep since the boys were off school this week (Thanksgiving) and hence no early start.  Finally we answered the phone and it was Sima’s parents calling from India.  Sima’s parents spend the months of November-March in India every year and then return to England when the weather is better.  Anyway, today they had decided to visit Maadi, a spiritual leader, on my behalf.  They spent the day at his temple and were now picking up some herbal medicine that Maadi gives out on Tuesdays to those in need.

Maadi is well known for his ability to help heal people from all sorts of troubles and problems, a large number of people see him for health reasons.  Sima and I have had the opportunity to meet Maadi in person and spend some time with him. He’s an interesting individual; people worship him since he is believed to have a closer connection to God than the average person. When we first met him, we were apprehensive, not knowing what to expect and having heard so much about him, you often wonder what the ulterior motive is for people like him, is it power, money or something else?  However within hours of spending time with him, he put us at our ease, talked with us and included us in his daily prayers and rituals.  We found out that he spends most of his time and his own money helping people in need.  He has a sign in his temple saying “No donations” and is very clear about that message.  He wouldn’t even let me donate money and I can be pretty persuasive.

Anyway, back to the point,  Sima’s parents went to see him and he asked to speak to me, hence the call from the temple that morning.  It’s really hard to get a hold of Maadi, I have tried for the last few weeks, leaving messages but have not had the opportunity to speak to him.   When I spoke to him that morning, he was sitting in front of a group of about 50-70 people who had come to worship and discuss their own problems so that he could hand out the appropriate medicine or advice to put them on the road to recovery. Speaking to Maadi really made my day – he gives me the inner strength that sometimes needs reinforcing and because he truly believes that I will get better, I believe I will get better.  After all, who can argue with a man of God right?

I am really grateful to Sima’s parents for taking the trip to see Maadi and spending most of their day there.  It is a long and exhausting day but is rewarding in so many ways. 

Jai Maadi, Jai Maadi, Jai Maadi

I got a call from the transplant doctor today giving me the results of the DNA tests for both my brother and sister (Hiten and Sangeeta).  They were tested to see if they could be potential bone marrow donors for me in the future in case I need a transplant. 

There are two type of transplants, an Autologous and an Allogeneic.  In the auto, they would use my own stem cells and put them back, it’s considered to be a pretty safe procedure.  In the Allo, they would use a donor’s stem cells.  The advantage of the allo, is that it’s the only known potential cure for myeloma.  The donor’s immune system cells could mount an attack within my body against the myeloma cells and find everyone of them and eradicate them.  The downside is that allo related mortality is high as 30% for non sibling donors, and 15% for sibling donors.  Plus there is no guarantee of the cure. 

The probability of having a sibling match is 1 in 4.  This means I would need 4 siblings to have a chance of a match.  I only have two.   Well, the initial results show that both Hiten and Sangi have matched,   I can’t believe it !. Not one but both have matched.  The transplant doctor and I are a little suspect of the results since it’s unbelievable.  Any how, we know at least one of them have matched even if the results are incorrect.  A more detailed blood test will be required closer to the time.  God has answered my prayers, he has given me another option, even maybe a cure.  I still can’t believe it and we really needed that bit of good news.

Click here to learn more about allogeneic transplants

A cytogenetic test was conducted on Alpesh’s biopsy sample, looking for any abnormalities in the genes.  A defective chromosome 13 (missing or partly missing) has been found in many myeloma patients and is linked with a poor prognostic outlook.  What to hear something strange?  The results show a deletion in the long arm (q) of one chromosome 10.  We asked Dr Z and Dr Reddy what this meant, neither one knows.  We also asked some other doctors that we are in touch with but nobody seems to know, it’s a mystery.  Alpesh appear’s to be the only patient with a faulty chromosome 10!  Good or bad?

Well, Alpesh and I take this is a positive result, At least it isn’t the dreaded chromosome 13.  After all 10 is a much luckier number than 13 right?  Maybe chromosome 10 means something really good,  maybe the medicine will work for Alpesh, maybe the body can cure itself.   We will continue to research what it might be. 

Alpesh had his Pet Scan today to look for any other hot spots and give us a baseline for any future MRIs or Pet scans.  After 1.5 hours of the radio-active isotope to make its way around Alpesh’s body, he had the scan which lasted about 1.5 hours also.  He was in pain during the pet scan because he can’t lie on his back for too long due to the tumors.  When he got home, he couldn’t be around anyone under 25 as he was a walking radio-active bomb.  Wonder what it’s doing to his insides

[by Sima]

Woke up early and drove the rest of the way to Atlanta.  Appointment at Emory is for 1pm.  My manager, Lee, lives in Atlanta and has kindly suggested meeting up for lunch before we go to Emory.  Thanks Lee for a nice lunch and your words of encouragement and support!  We got to Emory around 1pm. and after more blood work, we met with Dr Lonial at 3pm.  He is a transplant doctor who specializes in b-cell malignancies.  He is one of the authorities on myeloma and has written many papers on this type of cancer.  The meeting was well worth the trip – Dr. Lonial spent a good 1.5 hours with us.  He concurred with Dr Z and Dr Reddy that although Alpesh’s bloodwork indicates that the myeloma is not systemic, the 2 large plasmacytomas are worrying.  However, he checked Alpesh thoroughly and concluded that the treatment plan that Dr Z wants to put Alpesh on, is the right course of action as this three drug combination has shown good results (Revlimid, Dexamethasone and Velcade).  The Velcade in particular is important in Alpesh’s treatment plan as it has shown good results in reducing plasmacytomas.  The transplant part of the treatment will be determined in January after the four cycles of RDV.   We have a gameplan and it looks like hopeful …

Dr Lonial has agreed to keep in touch with Dr Z and Dr Reddy to ensure that the right decisions are being made for Alpesh.  We feel very lucky that everyone is willing to help through this process.  We have a follow-up appointment with Dr Lonial in January at which point we will discuss transplant options with him and then Dr. Reddy. 

Alpesh, Hiten and I left Emory feeling great.  Dr Lonial had added to the feeling of hope we had after our meeting with Dr. Reddy.  Lee had warned us to avoid Atlanta’s peak time traffic and so since it was now 5pm, we decided to take a detour and visit the Swaminarayan Temple.  Our luck continued that day as we got to the temple about 15 minutes before it closed and we managed to pray to all the deities before we headed out of Atlanta.

None of us had felt much like eating or drinking after hearing Alpesh’s diagnosis on Monday – today we felt more positive and celebrated with a glass of red wine J

We have two appointments today to meet with another oncologist for a second opinion and the other appointment is to meet with the transplant doctor.  The first appointment at MD Anderson is disappointing – no warm and fuzzy doctor unfortunately – just hard facts and doom and gloom.  Not a great feeling when we left that place – I was devastated and Alpesh was feeling very vulnerable.  Sangeeta (Alpesh’s sister) came with us and she too, was very upset. 

Our second appointment was the complete opposite – thankfully!  We met with Dr. Vijay Reddy at Florida Hospital.  He is the medical director for cellular therapy (transplant doctor).   His staff was very pleasant and helpful.  He spent an hour with us going through all our options.  He didn’t give us any false hopes but prepared us for the good and the bad.  In short, he renewed our hope and empowered us to fight another day.   Thank you Dr. Reddy! 

Before we left Dr Reddy’s office, we had asked him to recommend anyone he thought we should meet who might be an expert on myeloma.  He suggested Dr Sargar Lonial at Emory or Dr Ken Richardson at Dana Faber.

[by Sima]