Life's Journey with Multiple Myeloma

Yes, yes I know this post is long overdue especially since I promised to let you know the results of the serum free kappa lightchains as soon as we got them!

Anyway better late than never … we got the latest blood results a few weeks ago and the serum free kappa lightchains are still above the range but are lower than the previous blood test. The result this time was 22.2 mg/L. As we expected, Dr Z said to wait for the next set of blood results to see which direction those results go in.

Since we are not really into the waiting game … we reached out to Dr Lonial in Atlanta to get his opinion. His response was positive: “Would not worry about that number. Ratio is normal and absolute number just barely above normal”. So there it is … we’ve been told my the Myeloma Expert not to worry and so we’re taking his advice for now. Alpesh started his Revlimid again this week so will continue this for another 21 days per the usual maintenance program.

Otherwise all is well. The boys have Spring Break coming up so we are taking a trip to North Carolina to see our friends Anita and Piyush and then going on to do some skiing in West Virginia. The boys want to try their hand at snowboarding – we think the Winter Olympics really got to them. No, no I don’t think we have another Shaun White in our midst … we’ll just be happy if they come back with all limbs in tact!

[by Sima]

So, nothing major – things are same old, same old – we actually like same old, same old – so no complaints at all …

Only piece of news that I felt I should share is that in the last blood report, one of Alpesh’s myeloma markers (the free light chains) was a little high (max is 19, his was 24). Dr Z said that it was probably nothing to worry about and that we should just wait for the next blood report to see if it goes back down. This has actually happened before i.e. one month it was slightly elevated, and the next month it went back down to normal so we are not terribly worried but would obviously like confirmation. The M protein is still untraceable so that is good news.

Our next appointment with Dr Z is Wednesday, February 17th so Alpesh will have his blood work taken then and we will get our confirmation by hopefully end of the week … we’ll be sure to let you know.

[by Sima]

Hope your New Year has got off to a great start.

We met with Dr Ansara, the Endocrinologist, last week. She got the results from the thyroid ultrasound and the left lobe is nodule-free and everything looks normal. With hindsight, we probably should have just had Alpesh’s whole thyroid removed at the time of surgery last year. In our naivety, our thinking then was to keep Alpesh as “whole” as possible with the added hope that he *may* not have to take any additional medication. As it turns out, he has still ended up having to take 75mg of synthroid so keeping the left lobe didn’t really help us. I know, I know … no point looking back now – what’s done is done … we will just concentrate on looking forward.

One thing that came out of the Dr Ansara meeting was to be told that Alpesh’s vitamin D levels were low (which is amazing since we live in Florida and are surrounded by FREE vitamin D!) but there it is. Having researched this, it seems to be quite a common deficiency. Anyway, he now has to pop another pill daily … what is the count now Alpesh? 10 pills a day?

We met with Dr Z yesterday for the monthly check up and Zometa infusion. Alpesh has been on the Revlimid since January 5th so we didn’t expect his blood to be “thriving” and as we expected, it wasn’t … His WBC was low and his platelets were much lower than normal. Protein results will come through probably early next week so I will share in my next post.

I just re-read what I’ve written and it doesn’t sound very upbeat does it? It’s not meant to be depressing, I am just stating the facts as they are – it doesn’t mean that Alpesh is not well – he’s absolutely fine! As I have maintained throughout this blog … you wouldn’t even know what he’s going through … he really is a trooper!

[By Sima]

So here we are … teetering on the edge of 2009 … it always amazes me how quickly the Holiday season whizzes by and how rapidly we get to this point – it is almost as if someone presses a fast forward button as soon as we hit December 1st and before we know it, it’s January 1st of the New Year.

Last week, which seems so far away now, was our last appointment this year with Dr Z. He went over the MRI, blood and 24 hour urine test results. The 24 hour urine and blood tests are completely normal and there is no sign of M-protein in either. The MRI results were interesting in that nothing has really changed since the last MRI. The lesions in the bones have not really improved, the masses are still there (but we believe are just dead scar tissue). Dr Z said it may be years before this damage heals but luckily it is not affecting Alpesh’s day to day activities at all. So for us, if Alpesh can maintain this “no change status” , we are in good shape!

With regards to on-going treatment, Alpesh has been seriously thinking of going on maintenance Revlimid regularly as opposed to “pulsing” (one month on/one month off). Dr Z agreed with this as the latest research data has indicated that maintenance Revlimid has had some very good results (as good as/if not better than a bone marrow transplant). Therefore, since Alpesh does not really suffer from too many side effects (luckily the neuropathy is not noticeable at the moment and the dry skin I mentioned in my previous post is under control), Alpesh will start taking Revlimid every month indefinitely (21 days and 7 days off). So, together with the monthly Zometa infusions, we hope this treatment plan will keep him healthy and myeloma-free for a lot longer.

All in all 2009 has been a great year for us. I always try and “wrap up” the year with my own version of the 12 days of Christmas song to reflect the highlights of the year. In 2008, the year we couldn’t wait to see the back of, the 12 days of Christmas song started something like this “on the first day of Christmas, my true love gave to me, an excruciating biopsy”, then it just got worse and worse ending with “on the twelfth day of Christmas, my true love gave to me, 12 needles pricking”

Happily, this year, even with its slightly shaky start, has been filled with nothing but good news. Therefore, 2009’s version is much more upbeat … “On the first day of Christmas, my true love gave to me, a supportive and encouraging family”. Much better right? I won’t list the whole song because I am sure you all have better things to do, then read my pathetic attempts at songwriting but I will share the fifth and twelfth days with you as they do sum up the year nicely … “on the fifth day of Christmas, my true love gave to me “5 amazing doctors” and then lastly “on the twelfth day of Christmas, my true love gave to me 12 bones amending”.

I am excited about 2010 – I believe it will be a fantastic year – and I hope this time next year, my 12 days of Christmas song will start “On the first day of Christmas, my true love gave to me, a cure for my malady?” Perhaps?? … We will keep our fingers crossed …

That’s it for this year ..best wishes from me, Alpesh, Aaron and Keval to you and yours for an exceptional 2010. We hope your year is filled with a great deal of love, happiness and laughter together with peace, good health and prosperity.

[by Sima]

To all our friends and family in the US, we hope you all had a wonderful Thanksgiving break. We certainly did! A wonderful array of delicious food and wine in delightful company was a perfect combination for lots of fun and laughter – what more could we have asked for? To all of you who don’t celebrate Thanksgiving … you should consider it!

So how is the man himself? He celebrated his 42nd birthday on November 14th – and of course he had a great time because we made sure of it! Three weeks ago we met with Dr Z who went over the blood reports from the last visit and all looks well. One of the tests (Kappa lightchains) was slightly elevated but Dr Z said that it probably wasn’t anything to worry about and he was right since we just got some additional results back and everything looks perfectly normal.

Alpesh will finish his second round of maintenance Revlamid on Sunday. As an initial side effect of the Revlimid, Alpesh has had to deal with a rash on his fingers and his chest. Unfortunately every time he starts up the Revlimid, the rash comes back. It is an unfortunate side effect as it can become quite severe at times but Alpesh endures it without much complaint.

So, what do we have lined up for the next few weeks? We have a number of tests scheduled to ensure these are all completed prior to year end for obvious reasons. An ultrasound on the thyroid, more in-depth blood work, another 24 hour urine test and an MRI to gauge current status. This will put us in good shape to start the New Year …

Christmas is just around the corner so we are looking forward to taking some time to do NOTHING. We do have a number of social engagements lined up and we are definitely looking forward to those but for those days we currently have free, we are honestly planning to do as little as possible. This last year has been hectic and we’ve tried to balance so much – maintain a normal life at home/deal with all doctors visits/continue to work full-time/run around with the boys school activities/find family time etc., that it eventually does take its toll. We envisage enjoying some good old down time so we can recoup.

We will be meeting with Dr Z next week so hope to have some more results to share before the end of the year so I won’t wish you all a Happy 2010 just yet but will finish by wishing every one of you the very best for a happy, safe and merry holiday season.

[by Sima]

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]

Alpesh went to see Dr Lonial at Emory on Tuesday, September 22nd. Dr Lonial was really pleased to hear about the great results and congratulated Alpesh on his strength over the last year. One thing he did “ding” Alpesh on was maintenance. He truly believes that the continued use of Revlimid will help prolong the remission. Since he is the Myeloma expert, it did make us re-think the whole maintenance vs. non-maintenance argument. The main reason we have been hesitant on the taking the Revlimid is due to Alpesh’s neuropathy. It is currently manageable but obviously, with continued usage, it could get worse.

We saw Dr Z this Wednesday, September 30th and discussed the possibility of “pulsing” the maintenance so that Alpesh could take Revlimid for three months and then come off for three months. Dr Z said he actually liked this idea but preferred a one month on and one month off program which he believed would work better as the body would only be off the medication for a shorter period.

The truth is, there is no right or wrong answer . There have been clinical trials where maintenance has been used and patients have been in remission for 3-4 years leading completely normal lives but equally some patients have had bone marrow transplants and have had same or better results. There’s also no real data to state that “pulsing” might be a good alternative or that being drug-free until relapse is the way to go. We have to do what our heart tells us and follow what works for us in our circumstances.

Since the one month on and one month off was, we felt, a good compromise, Alpesh started 25mg of Revlimid on Thursday. He will be on this for 21 days and be off for 21 days. We hope that will be sufficient to ward off the Myeloma demons.

No real changes to his health due to the Revlimid apart from him being a little lethargic. Otherwise, it’s business as usual in the Patel household.

[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]

Well, we had a fantastic family vacation – we didn’t venture too far or anywhere exotic – just to South Dakota but it was a lot of fun! Biking in Sioux Falls, Corn Palace, Mount Rushmore, Crazy Horse, Jewel Cave, The Badlands, Devil’s Tower in Wyoming and loads of other activities including sliding down a 2000ft Alpine Slide which Alpesh and Aaron went down at full speed on their sleds so we are lucky Alpesh made it back alive to have his biopsy this week! Although with all the activities above, you may think we didn’t have any time to relax – we did. We managed some downtime too so we are fully recharged.

We got the MRI results before we left for our vacation and there does not appear to be much change. We can’t really work out if this is good news or not. Dr Z said that he didn’t really expect that the lesions in the bones would heal that quickly and it would probably take 3-4 years before we saw any significant change. Therefore we are assuming that the purpose of the MRI was to determine if there was any deterioration. Since there wasn’t, we are going to assume this is good news! Right? Nevertheless, Dr Z did ask Alpesh to have a biopsy on the lesion in the sacrum area this week which he had on Tuesday, August 11th.

What we thought was going to be a 2 hour appointment, ended up being an all day affair. Luckily, the boys were well looked after that day as Alpesh’s brother, his wife and two daughters were visiting us from the UK. We arrived at the hospital at 9:15am for registration and blood-work. Alpesh was taken in for his CT biopsy at 11:20am and came out around noon. Since he had been given a sedative and a local anesthetic, he was drowsy and was instructed to stay in the recovery room until the doctor discharged him at 4pm that afternoon. Apart from being a little sore since this is similar (but more painful) to a bone marrow biopsy, Alpesh was fine. We hope to get the results by early next week.

The main purpose of this test is to determine if the myeloma cells in that area are alive or dead. Of course you know what the ideal result would be, so we are hoping and praying for that and we ask you to do the same.

[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]

So it’s been a while since the last update. We’ve done quite a bit of celebrating over the last few weeks and in fact, Alpesh has now got the travel bug! He took his first trip to Islandia for work two weeks ago (first trip since his diagnosis in October). He was very pleased to be back in the thick of it and to see his team. He’s got a few other work trips lined up also and we’ve planned a few mini vacations while the children are home for the summer. We are semi-normal now and loving it!

In terms of Alpesh’s health, we saw Dr Z last week and it was agreed that at the moment, Alpesh would do only one cycle of the maintenance program (21 days on and 7 days off of the Rev/Dex combo). Alpesh expressed concern that his neuropathy is getting worse and Dr Z thinks it might be a good idea for Alpesh to be medication-free for a while to give his body a break.

Last blood results show a slight increase in IGG levels (still within normal parameters) but there is still no trace of the M protein.

Dr Z wants Alpesh to have another MRI (this will be his fourth since October!) to determine the status of the lesion in the sacrum. Once the MRI is completed, he wants to do the needle biopsy in that area. Currently Alpesh is scheduled to have the MRI on July 13th but that’s only if our insurance company approves this since they normally only allow 2 MRIs within a year. It took us four reschedules before we got the insurance company to approve the last MRI in April so we could be into September before this one gets done!

Physically Alpesh is doing really well. He’s been trying to resurrect the daily walk/bike ride to increase his stamina and strengthen his muscles. All good stuff …

Many of you will be lucky enough to see him as he travels around over the next few months so make sure you tell him how great he looks!

[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]

The last two weeks have been filled with tests, results and getting ready for surgery. Here’s a quick summary of where we are:

We met with Dr Z last week. All Myeloma indicators have remained stable. No M protein at all! All other indicators are normal. WBC is around 4 so just slightly below normal but nothing to really worry about. Since Alpesh is currently off all drugs (in preparation for thyroid surgery), we’ve made use of this time by getting together with family and friends to celebrate the end of eight induction cycles and the great results he’s had so far.

Alpesh had another bone marrow biopsy last week just to check that all is well there. The results show 6% plasma cells with no monoclonal cells. We have an appointment with Dr Reddy next Tuesday, June 2nd to discuss these results.

He had a CT scan last Friday to check the neck/throat area prior to the thyroid surgery since the last test was conducted in January. This morning, Dr Tipirneni said the results indicate that the nodule in the left appears to be the same size as it was in January and there doesn’t appear to be anything suspicious in the surrounding neck areas.

Alpesh is currently having surgery on his thyroid while I write this. We were at Winter Park Hospital at 5:30am this morning and they took him in around 7:30am. Since the CT scan indicates that only the left lobe is affected, we all agreed that unless Dr Tipirneni saw something of concern during surgery, he would only remove the left lobe and then we would wait for the results to come back from the pathology lab before making any further decisions.

Even though we all know that the world is full of people who have thyroid issues (underactive, overactive, non-functional, complete removal), and that one can function perfectly well without a thyroid with the help of a synthetic drug, Alpesh, unfortunately, has the added complication of the parathyroids which regulate the calcium in the blood and bones. Since the regulation of calcium is critical in myeloma patients, we are trying to “save” as much of the thyroid as possible to ensure the parathyroids stay intact also. With a full removal, there is always a risk that the parathyroids may get damaged.

Dr Tipirneni just beeped me to tell me that Alpesh is out of surgery. He said everything went well. He did not see anything suspicious on the right lobe or surrounding areas. There is no lymph node involvement. Alpesh is in recovery now – I will need to wait until they beep me again when I will be able to see him (another 1.5 hours). They will then take him up to his hospital room. He will need to stay overnight and Dr Tipirneni will hopefully discharge him tomorrow morning. His throat will be sore and he will not be able to talk for a day or so (that will be an amazing concept for Alpesh!).

Luckily he will be entertained tonight in hospital as he’ll be watching basketball, the Eastern Conference Finals (best of 7 games), the Orlando Magic are playing the Cleveland Cavaliers. Orlando currently leads 2-1 – Go Magic!)

[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]

We met with Dr Z yesterday and got the following results:

• The 24 hr urine sample, showed no trace of the M-protein.  Phew! The peeing in a bucket for 24 hours was worth it!
•  The MRI reports were crypted in medical jargon which even Dr Z was having a hard time understanding!  Dr Z contacted the Radiologist to ask him to explain his writings and here’s what he said

- The two plasmacytomas seem to have gone(!).  Can’t believe it myself so we will try and get someone else to take a look at the images and get a second opinion.

- There has been no further damage to the bones – what was there is still there unfortunately (minus plasmacytomas) but the situation has definitely not deteriorated. Dr Z feels it will take a while for the bones to heal, most likely looking at a couple of years.  The Zometa infusion should help that I will continue monthly for now

-The sacrum has a now visible lesion in the bone (the lesion has been there from the beginning but it was difficult to see because of the plasmacytoma), so Dr Z wants to do a needle CT biopsy to make sure there are no active myeloma cells in there

Apologies for not updating this sooner  but here’s a quick summary of where we are currently:

Alpesh has now completed seven cycles of the RDV combo.  He is currently off meds this week (his rest week). 

End of Cycle six results were great – still no trace of the M Protein.  That’s 3 cycles in a row where we have not seen any M protein!

As a precaution, Alpesh submitted a 24 hour urine test this week and we should get results next week.  Sometimes protein shows up in the urine so we wanted to cover that base too. 

We are waiting for approval from the insurance company to do another MRI as Dr Z wants to make sure that all is going well internally since the blood results have been very positive.

Hair – it’s growing J and is about 1cm in length now.  Coverage is still not dense but he’s definitely not bald anymore!

Alpesh’s spirits are still up – so no worries there!

[by Sima]

Dr Z gave Alpesh the End of Cycle 5 results and everything looks really good.  There is no trace of the M protein and all other markers still remain within normal range.   WBC is still hovering around the 3 area so they are lower than earlier this year but we assume this is because the chemo is really taking a toll on his insides.  His platelets are around the 150 range so we are hoping this upcoming week off will help to bring that number up.

Regardless of everything, he is still going strong – working, playing and remaining positive as before.  With two cycles to go, we start wondering now what will happen when he comes off the medication?  Will numbers start creeping up or will he be able to maintain the remission for a good length of time?  Even though we’d rather not think about this and I know all of you will advise us not to, it is still in the back of our minds.   We also will need to decide if some type of maintenance medication should be taken to keep the beast under control or should we give the body a chance to rest/recover and try to fight itself.  We will leave that discussion for another day.

Although we had always been fairly healthy eaters, we still made some changes to our diet after reading suggestions from fellow MM sufferers/nutritional websites and an excellent book that was sent to us from Sorell (Thank you Sorell!).

Alpesh is having no caffeine at the moment (apparently interferes with some of the chemo drugs) and I have managed to make him eat more fresh fruit and vegetables (including lots of broccoli much to his dismay!).  Broccoli is supposed to be the miracle food and since I’ve loved it from a young age, I agree wholeheartedly.  You will find it harder to get Alpesh to agree.  Nevertheless, Alpesh actually increased his appetite over the last 6 months and has managed to maintain his weight and keep his strength up which we believe is how he has coped so well with the chemo. 

Cycle 7 will start next week (April 5^th) and we hope to conclude all cycles by week of May 12^th at which time Alpesh will have completed eight cycles of the RDV drug combination. 

[by Sima]

Apologies for the long gap between posts – things have been a little hectic, however, I am pleased to report that no news is good news!

Everything seems to be going well.  Alpesh completed cycle five and had his rest week last week where he savored the luxury of drinking some beer/wine and dining out.  He started his sixth cycle on Monday, March 16^th so he’s on his best behavior again.   We have not seen any side effects so far and hope that will continue until he finishes all eight cycles.  In fact he has now decided against taking the anti-nausea medication that is normally given during the Velcade infusion as he seems to fair better without it.  His philosophy being, the less medication the better. 

We had our three weekly appointment with Dr Z on Tuesday, March 17th.  Nothing new to report other than all markers remain normal.  Dr Z is recommending that we do some tests at the end of the eight cycles to determine next course of action, if any.

Hair status – because that’s the hottest topic right now J  There are definitely signs of life – too early to celebrate though.  Luckily he didn’t lose any hair from his eyebrows or eyelashes so it hasn’t had much impact on the children.  (Thank you all for the encouraging/funny comments regarding lack of hair) J

There are definitely some benefits though … he doesn’t have to shave every day which gives him more time to do other things …

[By Sima]