Life’s Journey with Multiple Myeloma

Firstly, let us start by wishing you all a very Happy New Year!  2008 was not one of our better years for obvious reasons but we are hopeful that 2009 will be a fulfilling and rewarding year for us.

Alpesh started his fourth cycle on Sunday – time flies … but we certainly weren’t having fun!

We met with Dr Z on Tuesday Dec 30^th.  He continues to be positive about Alpesh’s progress and said that the response so far has been better than he had hoped for.   He has ordered the MRI and skeletal scan for week of January 12^th which will be Alpesh’s rest week during the fourth cycle.  We will compare these results from those in early October to determine  how well Alpesh’s bones, plasmacytomas and lesions have responded to the four cycles.   He also suggested stopping the monthly Zometa infusion for now until we know the current state of Alpesh’s bones – perhaps he won’t need it as often now?

The IV infusion of Velcade went very smoothly that day.  Cindy the nurse is a pro in getting his veins to cooperate so we are really grateful to her for making the experience quick and efficient.   Blood results were surprisingly good – the week off must have helped since Alpesh’s platelets had doubled since the last IV infusion!  Platelet count is 310 currently with WBC at 5.0 and RBC down to 4.65.  Great numbers for a chemo patient. 

We expect to get the results from Cycle 3 next week so we will share them as soon as possible.

[by Sima]

On Tuesday,  I had my IV infusion as usual + the monthly Zometa infusion as well.  The nurse, Cindy, found a vein first time, smoothly and quickly – what a relief.   My CBC blood report showed that most of my counts remain on the boundaries of the lower end of the scale except my platelets, they continue to drop with each test.  I started with over 330+ back in early Oct and am down to 176 now.   We asked Cindy what can be done to boost these but she considers these excellent numbers so we shouldn’t be concerned.   They would consider a platelet infusion if they dropped to around 60 but hopefully I can complete the 4 cycles before that.

As for my myeloma markers,  Dr Z said that my m-protein has dropped to 0.2 (from 0.5 at the end of cycle 1) and that my IGG dropped to 973 (from 1405).   He was very pleased about the m-protein and said that the number is almost negligible now.  I, however, would rather see no trace of the m-protein.  We asked for a copy of the results from the nurse but it hadn’t made it to my charts yet so I will pick it up on Friday at which point we will send to Dr. Lonial, my myeloma specialist for his opinion.

During our appointment with Dr Z on Tuesday, December 9^th, we asked for his recommendation regarding the stem cell transplant.  Should we prepare for this option? Alpesh’s case is unique – he only has 11% contamination in his bone marrow, however the rest of his body (the plasmacytomas in particular) shows advanced disease.   

Dr Z wants to wait and see the results of a future MRI and biopsy before making the decision to go to transplant.  If there is significant reduction in the bone marrow contamination and more importantly, the size of the plasmacytomas, Alpesh may not need a transplant immediately.  He would rather save that option in case it is needed later on.

The transplant doctor, Dr Reddy, has already made preparations to harvest Alpesh’s own stem cells in February since four cycles of Revlimid is about all the body can take before damaging the existing bone marrow.  All MRIs, biopsies, CT scans etc. will most likely take place during the week of January 12^th. Alpesh will be given a chemo drug on January 22^nd that will involve an overnight stay at the hospital.  After that, they will be ready to harvest his stem cells in early February.  These dates are assuming we stay on track.  The stem cells will be used if we go ahead with the transplant immediately or frozen until Alpesh needs them depending on our decision.

Of course the thought of the transplant still scares us both so we are hoping that we don’t have to go down that path.  However, Alpesh has been looking at the transplant option a great deal and in fact ponders over the auto vs. allo daily. 

Which is the right way to go if he has to have one? 

My thoughts are to not even consider those options until we are sure he has to have one, but of course, I am not the one who will be having the transplant. 

[by Sima]

Today was the first day of Cycle 3.  We had a 9:30am appointment with Dr Z.  The appointment went well as he reiterated how happy he is with the results so far (primarily end of cycle one results).  He indicated that he has never seen a patient with such a dramatic decrease in the markers in so short a time period!  We had a brief discussion regarding the stem cell transplant but we will give more details on that later in the week …

After the appointment with Dr Z, we went to over to get the Velcade IV infusion.   Tonija, the nurse, found it hard to find a vein today.  She found one in the right forearm and took some blood for the CBC labs.  The results were very good.   WBC was 5.4.  Platelets had gone up very slightly to 254 (apparently that is “awesome” as below 100 is when they would start worrying, 20 is when they would transfuse).  This blood work will also be used to do the same test that was done after Cycle 1 so we will anxiously await those results.

Unfortunately today’s infusion wasn’t as smooth sailing as previous ones.  When Tonija tried to push the Velcade through together with the saline, Alpesh felt some pressure and a burning sensation.  There was also a knot (of saline) above the puncture hole.  Urghhh – I had to look away L  She stopped immediately and tried to find another vein (in the hand this time) but that did not work either.  She explained that the general rule is that the nurses only get two chances because this can become stressful so they recommend another nurse.  Michelle, another nurse, tried and got a vein in the left forearm.  Thank goodness!   Michelle said the veins get tired from all the stabbing every Tuesday and Friday.  It is possible to put in a port to avoid the constant stabbing but we are hoping not to have to do that yet if we can avoid it.  Once the vein cooperated, the Velcade IV went in with no problems and we were done in 30 minutes.

One thing we talked about on the way home was that, since Dr Z is a general oncologist, we want to send the results of cycle one to Dr Lonial at Emory to see what he thinks about the 75% decrease in the M spike.    Dr Lonial is an expert in Myeloma and may be able to put Alpesh’s results into a myeloma prospective for us. 

Don’t get us wrong, we are delighted that the medication appears to be working but we want to make sure that we are not getting overly excited over the results we have seen so far.   

[by Sima] 

Alpesh ended Cycle 2 and he is officially off all the chemo drugs (rest period) until next Tuesday the 9^th when it will all start up again for Cycle 3.  Thankfully, he feels just as good as he did after cycle one – click here for details on that update in case you missed it. 

He continues to feel colder than the average person and is layering up even more as the temperature has dropped a little in Florida.

Since we have restricted the number of visitors that come to the house, I am often asked about his appearance.  What can I say? He’s no Brad Pitt but he’s still my Alpesh and he looks exactly the same physically.  In fact if you walked through the door right now, you would never know that he is going through this.  I am not sure if you are all aware that this particular 3 drug combo does not cause hair loss so apart from looking fatter (anyone would look fatter with five layers of clothing), he looks just as handsome and debonair as he always did (he said he would give me some money if I wrote that J). 

Oh and one thing that has definitely not changed is that the headset is still permanently attached to him and he spends his life on the phone.  The chemo has definitely not affected his vocal chords. 

On a serious note, we have noticed one change this time round, his long distance vision is slightly blurred now.  Dr Z says it’s because of the meds (which one of the three? - we don’t know) and we are not sure if this is permanent or if his vision will correct itself later on.  We’ll check in with the eye-doctor to see if he can tell us anything.

[by Sima]  

As I continue with my treatment, the threat of infection is pretty high, as it is, myeloma affects the immune system and on top of that , the chemo drugs are driving my white blood cells counts lower and lower.  In fact, many myeloma patients don’t die because of myeloma itself, but die due to myeloma related illnesses such pneumonia.  To keep myself safe and in good health so that I don’t need to stop the treatment mid-cycle, I have restricted myself to the house for the most part even limiting the number of visitors (pretty much none) to the house.  I’m sure you’ll understand.

I do walk 3-4  times a week on the local trail, it’s a nice three mile walk and I get the chance to soak in some sun and fresh air, work the muscles and am often accompanied by Sima and the boys or my mum. It’s a great time to talk and walk.

Another benefit of homebound is rest, I haven’t rested like this in a long time, I have surely made up for it in the last 2 months. My days have become longer, in a nice way, I’m not tired or running around with the boys (poor Sima), although I do miss going to their events especially the sports on the weekends.

Truth be told, house bound is working, I have remained healthy over the two cycles, minimal issues and my immune system is holding up.  I haven’t felt fatigued or lost my appetite due to the chemo drugs.  I have been able to maintain my weight since this all started.

Best of all, I have seen a lot more of Sima and the boys and am making up for lost time.

Today is Alpesh’s last Velcade IV infusion for the second cycle.  Tomorrow will be the end of his second cycle – after that he’s only got two more cycles to go!   Michele, the nurse, spent quite a bit of time trying to find a vein to draw blood today.  The left hand did not cooperate after being punctured a few times so had to move to the right arm.  This worked, but Alpesh said that he could feel a burning sensation as the drug went through the IV into his vein today. 

Don’t worry .. he’s okay – in fact – you’d never know he is going through this.  He is the same old Alpesh J  

[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

Alpesh’s bones hurt today.  We had been warned that the first time you take Zometa, you feel you have been hit by a truck.  I think he felt he had been hit by a semi!   Apparently his bones ached, creaked and burned today – I felt so bad for him!  To add to that unfortunately when he got the Zometa through IV, it caused inflammation of his vein and there is a big bruise on his right forearm and the area is very tender.  We will need to show this to Dr Z when we see him on Friday for the next IV treatment! - [by Sima].

Today,  I start my 2^nd cycle with apprehension.  I have had minimal side effects during the 1^st cycle so am hoping to maintain this.  I had an appointment with Dr Z today and he drew blood for the more detail labs.  These labs will provide an insight on how effective the drugs have been so far.   The results will reflect one complete cycle

Dr Z also prescribed another drug, Zometa, today for helping with the bone damage.  Zometa inhibits the activity of bone-destroying cells called osteoclasts. The hope is that if I can reduce bone destruction, then my natural bone generation can repair some if not all of the damage done so far.  It should work since I am still young and healthy but it will take a few years.  Zometa is given as a monthly IV infusion over 30mins.

Today, is my 41^st birthday.  I am not one for celebrating my birthday, I always looked at it as getting older and one less year, rather than appreciating another year.  For the boys, we would do the cake thing and take pictures.  Going forward, each birthday will become priceless.

Sima surprised me with an album she had been secretly working.  She had such a fantastic idea - she got our friends and family to contribute by sending letters, emails, photos, anything that would take me back to those wonderful earlier years.  It was absolutely brilliant, I couldn’t put it down until I read every piece.  It brought a smile, grin, chuckle and even some tears as I recalled events recounted in the letters.   I will cherish this book forever, and will definitely keep it handy so I can use it to help me through some of the darker days that lay ahead.  Thank you to everyone who contributed.

Today we went to a support group for myeloma patients.  This group was started by Ken Fabian, a fellow myeloma patient.  His story is interesting as he was diagnosed 3 years ago and didn’t have the money to pay for his treatment or his stem cell transplant.  Dr Edwards of Florida Hospital helped him with this by convincing Florida Hospital to give him his transplant free of charge.  Wow!  What a great gesture.  Ken is alive and kicking and is celebrating 2 years of being in complete remission. 

Dr Edwards came to talk to the group and it was interesting to get more information on transplant options but interestingly enough he actually spent more time talking about myeloma, the disease, as opposed to the transplants.  The session was very informative and well received.  What surprised us most during this session was in our short myeloma life, we had become more knowledgeable about this disease compared to some of the other older patients in the session.  We were the youngest attendees and in fact people thought we were in the wrong room until Alpesh asked a very detailed question about transplants (cell-purging)  that I think went over everyone’s head except for us and Dr Edwards!  Trust Alpesh!!

The next gathering will be on December 9^th with a keynote speaker being a dentist.  We will definitely be attending …

[by Sima]

The question I get asked most is “How is Alpesh doing?”  Of course being on chemo conjures up this image of this frail person sitting with a little blanket on a sofa feeling weak.  Well I am here to tell you that that is definitely not how Alpesh is doing.  He has been amazing – he has worked throughout this whole cycle, has had minimal side effects and has had a smile on his face throughout (sometimes it fades a little but most of the time, I can revive it).   He tries to exercise by walking around the patio area while he is on work calls and actually gets out and walks on the trail for about an hour in the evenings (3 miles round trip).

At the end of cycle one we can see physical signs of change:

• Firstly the rash that had taken over his body has disappeared.  We believe the Dexamethasone helped with this.  Whatever helped with it, we are grateful as it was unpleasant.
• Secondly the infamous limp is gone!  Within the first week of being on the meds, he started walking normally again.  We believe the plasmacytomas have already started shrinking. 
• Finally the pain in his back is also gone!  The sharp, stabbing pain in the lower back/right shoulder blade has disappeared.  Again we believe this is because the plasmacytomas have shrunk.

The only change I can see is that he feels generally colder than the rest of us.  The temperature in Florida is still fairly high, but Alpesh is layering up to keep himself warm these days.  This is no big deal at all as it’s easily manageable.

Good news all round!   See later post for blood results from cycle one. 

[by Sima]

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

I have broken out in a rash from the back of my head, down my neck and on the sides of my chest all the way down to my waist.  It’s manageable and I even forget about it during the course of the normal day.   The drugs are also doing a number on my stomach,  I have toggled between diarrhea and constipation for the last few days.  It seems the revlimid causes the diarrhea and the velcade causes the constipation.

We got back the results of the pet scan today, no new hot spots were detected from the original MRI and CT scans done earlier in the month, so that’s the good news. 

It’s always scary to read the results in black and white, I guess since one can’t see or feel the tumors, one tends to forget about them, but to read about them reminds you of the gravity of the situation and the language the doctors use, is never comforting.

Today,  I start my treatment.  The doctors and I have decided upon a three drug combination,  Velcade, Revlimid and Dexamethasone.  The cycle will be 3 weeks in total, two weeks of drugs and one week of rest.  I will take the Revlimid pill every day for 14 days,  the Velcade as an IV infusion one Tuesdays and Fridays and the dex on the day and day after the Velcade.  Not sure what to expect, I have heard the horror stories associated with chemo and not sure how my body will react.  I will just need to take each day at a time.

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