Life’s Journey with Multiple Myeloma

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]

This week I started my fifth cycle of the same drugs (Velcade, Revlimid and Dexamethsone) after taking a break for almost 5 weeks, well it wasn’t a break as such since I harvested my stem cells during that time. I have lowered the dex dose to 10mg per day (4 days per week) rather than the 20mg I was taking previously.

I was hoping that they could use the hickman line in my chest for the IV infusion saving me the needle in the arm twice a week but on Tuesday, I found out that “they” the doctor’s office won’t use the hickman line for IV infusion which doesn’t make any sense at all. I didn’t argue since I just wanted to get it over and done with. So with that being said, this morning (Thur Feb 26), I had the hickman line surgically removed as I don’t need it any longer or at least not for now until I decide to go ahead with the transplant. I will worry about it when the time comes.

I had a blood test last week prior to start of the 5th cycle and no sign of the m-protein - hooray !!!. My B2M has climbed to 2.0 from 1.6 previously but Dr Z is not worried about this for now. I also think it might have to do with all the drugs that I took for harvesting so I need to give it time for it settle down a little.

Finally, my hair still hasn’t started to grow back, it’s been 12 days now but still no sign. Not to worry, I am sure it will soon.

With so many results and so many opinions, we thought it would be a good idea to summarize current status and our ultimate decision regarding next course of treatment:

Results from all the tests show the following:

Pet Scan - We got confirmation that there are definitely no hotspots in the plasmacytomas. They didn’t shrink but the malignant cells appear to have died. We are all assuming that this is now dead scar tissue. Radiation will only be necessary if they start causing any pain.

FISH - it came back negative! The Chromosome 10 issue appears to have disappeared. The marrow that was taken had no irregular chromosomes and no myeloma cells.

M Protein - Emory Clinic in Atlanta found a trace of the protein but it was so minimal they could not put a number on it.

Bone Marrow Biopsy– as mentioned in an earlier post, there are no monoclonial cells in the sample that was taken. The 6% plasma cells we had seen have probably decreased to 5% or less after the Cytoxan treatment.

All results show he is in REMISSION! I love that word!!

Side Effects
He’s had to deal with bone pain due to the Neupogen, slight neuropathy due to chemo drugs, hair loss due to Cytoxan and general tiredness from the combination of drugs prior to Stem Cell Harvest. Other than that he’s coping very well.

Options discussed:
Dr. Reddy has been strongly recommending an autologous transplant as the next step. His thought is that since the disease is minimal at the moment, it is a good time to strike and kill it even further with the transplant. Statistically you can get a remission of 2-3 years with a transplant but the remission is, of course, very individual.

We shared the FISH and Pet Scan results with Dr Lonial and he still maintains that we should hold off on the transplant. At this time, he believes that Alpesh can achieve good results with another 4 more cycles of RDV and then possible maintenance on Revlimid. The reason for the 4 more cycles would be to destroy any microscopic traces of the myeloma.

Dr. Z concurs with Dr Lonial. He stated that truthfully there is no right or wrong answer since all trials on drugs vs. transplant are still being done – we just have to do what we think is right for Alpesh. He, like Dr Lonial, feels that Alpesh can get the same kind of remission with the drugs.

Decision on next step
We’ve decided that we will go with Dr Lonial’s recommendation since he is well researched in Myeloma and he is confident that this is the best course of action for Alpesh. Alpesh will start his first cycle next week. The Dexmethasone dosage will be reduced but the Revlimid and Velcade dosages will remain the same for now.

All in all, the results have been excellent. Minimal to no disease in the blood/bone marrow and the plasmacytomas have no hotspots! We hope the next four cycles of RDV will complete the process and he can be in complete remission by summer.

[by Sima]

Today we were at Dr Reddy’s office for the stem cell collection.  We arrived at 7:30am and Alpesh was hooked up to the stem cell collection machine at around 10:45am.  The blood counts were excellent – he was apparently at his peak in terms of stem cell production so this was the ideal day to collect.  The Neupogen mobilizes the stem cells and also increases white blood counts.  Last Thursday Alpesh’s WBC was down to 0.2 and he was told to take precautions by wearing a mask and avoiding all fresh fruits and vegetables.  Today Alpesh’s WBC was 50!  The Neupogen did its job.  Dr Reddy’s staff was awed by his CD34 numbers which were 256.  The CD34 is the concentration of stem cells and the higher the number the quicker the collection time.  Since the 256 number was high (which is good since the number they need is anything above 10), the staff were taking bets on how many stem cells would be collected in a day!  Bets ranged from 5 million to 20 million.

The machine that Alpesh was hooked up to looked like something out of Star Trek. It made whirring and clicking noises but worked effectively to collect a record 23.8 million stem cells in 6 hours!  Normally patients need to come in for 2 or 3 days to collect that many so he definitely over-achieved J  This will be enough for more than two transplants if necessary.

[by Sima]

After reading the side effects and what to expect, Alpesh has faired pretty reasonably.  Although his stomach has been unsettled since he came home from the hospital, he has forced himself to eat and has not lost any weight.  He has managed to avoid the dreaded vomiting that we expected. 

Since last week, he has been extremely tired.  Although he works throughout the day, he is now forced to vegetate in the evenings as his body is calling for rest.  Yesterday, he complained of aches in his body and we believe that is the Neupogen doing its work.  His bone marrow is working overtime to make more stem cells which is taking its toll on his body and causing fatigue. 

Initial Pet Scan results show minimal activity in the plasmacytomas. Although this is great news, we are struggling to understand how this contradicts the MRI which indicated the plasmacytomas had not shrunk.  Could they be just dead tissue as suggested by Dr Lonial and Dr Z?  However, there still seems to be some confusion as to why they did not shrink.   We are hoping that last week’s Cytoxan may have helped reduce them but we won’t know for sure until another MRI or Pet Scan is taken.

At this time our focus is on the stem cell harvest planned for next week so we have put the plasmacytoma mystery on the back burner, for now at least.  One day at a time as they say …

[by Sima]

I had to write about the first time we “flushed” Alpesh’s Hickman Line at home.  The boys were terribly “excited” which seems like a strange word but they were truly enthused about being able to help.  

With everything needing to be sterile - myself, Aaron and Keval donned ourselves with our surgical masks and gloves as we laid out all our instruments on a sterile towel.  It was just like in ER, I would put out my right hand and shout out what I need e.g. “saline” and then “Heparin” and Assistant Doctors Aaron and Keval would oblige by handing the item over.  They would then wait patiently for the next request. 

Luckily they are both not squeamish so were okay with the whole procedure and in fact were fascinated with Alpesh’s “wound” when we had to change the dressing.  On the other hand, for those who know me well, know that I am squeamish so this is a real step forward for me. 

The boys also assist with the Neupogen injections (2 every night).  Each of them gets to alcohol swab down the area that will be poked and then I have to do the honors.

This has been a family moment for us – normal families watch movies/play board games or go to theme parks together but not us J  - Oh No! not this family, we like to be different!    The boys are growing up so quickly, have matured and stepped up under the circumstances – I am so proud of them. 

[by Sima]

Alpesh had his Pet Scan on Tuesday to determine the hotspots.  We do not have the results yet so will keep you posted when we hear something.

Alpesh went into hospital yesterday.  We arrived at 5am for his surgery to have a Hickman Line inserted into his chest.  They got him ready for surgery at 6:30am but did not take him into surgery until 9:30am!  I have a great picture of Alpesh with his surgery cap on.  Alpesh said he felt like he wanted to serve me some food as he looked like a cafeteria employee.  That picture will be shared much later when he is better – it will be worth the wait, believe me!  J 

Dr Khouzam who operated on him was excellent and luckily there were no complications and everything went well except that he has 3 tubes extending out of his chest at the moment which is a constant reminder to me of what he is going through.  It is painful to watch him go through this and we all feel helpless because there is nothing we can do to “make it go away”. 

They transferred Alpesh to the Bone Marrow Transplant Unit at around noon where he was in a “temporary” room until 6pm when he was finally moved to his actual room.  That afternoon they started an IV saline drip for the first hour, post-surgery antibiotics for another hour, then a Cytoxan drip for 2 hours and then back on the saline drip for 24 hours.  The Cytoxan is highly toxic and needs to be flushed out of his system regularly to ensure it does not cause any damage in his body. 

The side effects?  There are apparently many to choose from L and so far he feels nauseous, has lost his appetite and has actually lost some magnesium and phosphate in his blood which they are pumping him with at the moment.  He is also being given anti-nausea medication which is making him drowsy. Hopefully he will get some much needed rest.

I am at the hospital at the moment.  Today we will be shown how to look after the Hickman Line to ensure it does not get infected.  We are not entirely sure how long Dr Reddy wants him to keep this inside him.  It will be used for the stem-cell harvest and is then usually used for the bone marrow transplant but since Alpesh is not planning to do the transplant as yet, we don’t know what Dr Reddy’s plans are.  Of course the port can be used as an access point for Velcade when Alpesh goes back on the RDV regime for four cycles but it has the risk of infection so we will have to weigh up pros and cons and decide what do after the stem cell harvest. 

Today, we will also be shown how to self-inject the Neupogen for the next 10 days so that Alpesh can mobilize the stem cells ready for harvest.  We have been told that he will be discharged this evening.

Hospitals are never great places to write about unless you are there for the birth of a baby but the staff at Florida Hospital have been excellent and very attentive, so we are truly grateful to them for making the experience tolerable. 

We are looking forward now and keeping our fingers crossed that everything will go well for the stem cell harvest during week of February 9^th.  We feel confident that the cells harvested will be “clean” and feel comfortable knowing that the auto transplant is a viable option for us.

One thing, I’ve been meaning to let you all know about is an update on Alpesh’s eye.   I think I had mentioned in a previous entry that Alpesh’s eye had swollen up (left eye only) while he was on his last cycle of the RDV combo.  His vision was also a little blurry.  He had his eyes tested on Wednesday this week and the doctor has given him the all clear in terms of vision (still 20/20) and in terms of eye-pressure,which was our biggest fear since some of the chemo drugs are known to cause glaucoma.  It looks like the swollen eye (which has now gone) may have just been an allergy.   Phew!  

[by Sima]

We went to see the Transplant Doctor, Dr Reddy today.  Dr Reddy will be harvesting Alpesh’s stem cells and will potentially do the transplant if Alpesh ever needs it. 

We shared all the results with him and interestingly enough he had another opinion regarding the bone marrow and the plasmacytomas. 

With regards to the bone marrow, at 6% plasma cells, Dr Reddy still feels that there is contamination and that the bone marrow is not clean of myeloma cells.  Apparently a normal person would have anything below 5% so he feels that the 1% or so that Alpesh has in his marrow are myeloma cells.

His opinion with regards to the plasmacytomas is that since they have not shrunk much with the RDV combination, he believes we should use another strong chemo drug, Cytoxan which has the dual purpose of “cleaning” the bone marrow and plasmacytomas further and will also be used to get Alpesh ready for the stem cell harvest.

Therefore, as it stands currently the plan is as follows:

• Thursday, January 29^th – administer Cytoxan involving an overnight stay in hospital
• Sunday, February 1^st – Start 10 days of Neupogen (by injection) which will help to mobilize (float) the stem cells in the blood
• Monday, February 9^th – Stem Cell Harvest

 As mentioned yesterday Alpesh will be having a Pet Scan to determine the “hot spots” in the plasmacytomas and after harvesting, Dr Reddy also agreed with Dr Lonial and Dr Z that radiation therapy could be used to “zap” whatever is left.

We have decided to go with Dr Reddy’s plan to administer the Cytoxan because we feel that we would like to do whatever is possible to ensure the stem cells that are collected are as “clean” as possible.  In the process, if the hot spots in the plasmacytomas are reduced, that will be an added bonus. 

[by Sima]

I know many of you have been waiting anxiously to hear back on the results.  We have been so busy the last few days trying to juggle normal life (work, school etc. with the appointments with the doctors) that it has been difficult to share this information any earlier with anyone.

Here’s a quick summary:

First the good news:

• The bone marrow biopsy indicated that there are 6% plasma cells in the marrow (down from 11%), however more importantly, there are no monoclonal cells in the sample taken indicating no trace of myeloma cells.  We need to remember that this was a sampling from one area of the bone marrow and hope that it’s true for all of the marrow.
• There appears to be no further damage/lesions to Alpesh’s bones etc.  However, the damage that has been done is unfortunately significant but with time and the right medication, he might be able to repair the bones.
• Cycle 4 blood work shows no trace of the M protein in his blood at all!
• All the heart/lung tests were normal – so nothing new to worry about.  Thank Goodness!

The not so great news

• Unfortunately the plasmacytomas did not shrink.  The one in the sacrum is the same size but is not pressing against any bones/nerves so is not causing the pain and limp that it initially caused.  The one near the lung is now three different smaller tumors (it was probably always 3 tumors but they could not see the definitions before). This is actually good news because these appear to have shrunk a little. 
• Dr Lonial and Dr Z both concur that this is nothing to be too alarmed about since they may have limited “hot spots” now (active myeloma cells) within the tumors so they may just be dead tissue that will be in Alpesh’s body forever.  They won’t do any harm but will probably calcify at some point.   

The Gameplan II (at the moment anyway)

• We will harvest Alpesh’s stem cells in February as planned.  The cells will be stored if Alpesh needs to do an autologous transplant in the future. 
• Alpesh will have a Pet Scan to determine if there are any hot spots in the tumors.  If there are any, both Dr Lonial and Dr Z recommend using radiation therapy to “zap” them once and for all to kill active myeloma cells.  They are pretty confident that this will be achieved. 
• Alpesh will then do another 4 cycles of chemo using the same drugs as before, Revlimid, Velcade and Dexamethasone to kill off any microscopic myeloma cells that might be still be in his body after the radiation. 

This is a very top line summary of what the doctors have indicated.  In general the news is very good.  Even though the tumors are still there, the doctors are confident the radiation will kill off the cells so we feel very hopeful.  If Alpesh can sustain the next four cycles, Dr Lonial and Dr Z both have suggested that he may go into remission.  For how long?  We are not sure but it will at least buy us some time and that is what we need. 

Alpesh’s spirits are up – the bone marrow results were a real bonus for us.  No monoclonal cells and no trace of the M protein in his blood – Wow! 

Thank you all for your thoughts and prayers…..I think you’re being heard. 

[by Sima]

As mentioned in our last post, this is the week of truth for us as Alpesh is under-going multiple tests to determine how his insides responded to the four cycles of chemo.  This is what he has had to endure this week:

• MRI – With almost 4hrs of MRI’s this week, we got a phone call this afternoon asking him to come back tomorrow for an additional test.  We are not sure if this is good or bad.  Did they find something new and they need a better look?  Did one of the MRIs not come out too well or our most positive thought is that they couldn’t find the tumors and they want to check again to make sure.  Here’s hoping ….
• Bone Survey – They literally took X-rays of every part of Alpesh’s body, from head to toe. I am guessing that it must have been about fifteen X-rays!
• Pulmonary Function Test – This was an interesting one.  They sat Alpesh in a glass chamber, pinched his nose closed with a clip (if he had goggles, he would have looked like a synchronized swimmer!) and made him breathe through his mouth.  The purpose was to test his lungs both in terms of capacity and resistance.  The person who performed the test seemed pleased with the results.
• MUGA Scan – We had to Google this one before we went J   In this test, they drew two vials of Alpesh’s blood, then they mixed the blood with a radioactive tracer and re-injected it into Alpesh so that they could watch how the blood flowed through his heart.  They took a video of how the heart is functioning in terms of blood flow and the valves.  He had to lay in one of those time capsule machines for about 20 mins while the camera recorded his heart’s activity from three different angles.
• EKG – Pretty common test. It’s a recording of the electrical activity of the heart
• BMB – Bone Marrow Biopsy.    This was the worst to watch and the nurses even suggested I leave the room but I said I would look away if I had to – I wasn’t going to leave him.   They numbed the area on his rear pelvic bone and using a hollow needle, they pierced right through into his bone and sucked out some bone marrow.  This was particularly nasty!    It looked really painful and afterwards, Alpesh confirmed that it was …L  Then they used what looked like a corkscrew to screw into his skin and bone to take a sample of his bone.  They had to do that twice because they didn’t get a good sample the first time. 
• Blood tests – In one sitting, they drew twelve vials (!) of blood for various tests.  The first vein they used went dry after the eighth vial and they had to find another to do the other four.

The results should all be back early next week and we will share as soon as we can. 

[by Sima]

We got the end of cycle three results on Monday. Unfortunately it appears that Alpesh’s M-spike went up from 0.2 to 0.7! We find this really surprising and are questioning the blood results. For one, the results indicate a beta and a gamma peak whereas previous results have only shown a gamma peak. Dr Z did not seem overly concerned saying that those numbers are negligible, but it is strange that Alpesh should have two protein peaks. We plan to send all three end of cycle results to Dr Lonial for his opinion and will discuss with him in person during our appointment on January 20th.

As you all know Alpesh’s case is already unique (large plasmacytomas, disease not systemic, chromosome 10 etc.), we are not sure if the two peaks are another anomaly that is particular to Alpesh.

Last Friday and yesterday’s IV infusions went relatively smoothly although his platelets have dropped to 207 which is a significant drop from the 310 we saw last Tuesday. WBC are hovering around the 4 range.

The skeletal scan, MRI and Bone Marrow Biopsy are all scheduled for next week and we hope to have the results of those by Monday, January 19th latest so we can share everything with Dr. Lonial on the 20th to get his opinion on the progress so far and how he thinks we should proceed. Dr Lonial is a Myeloma expert and was so key to forming our game plan when Alpesh was first diagnosed that we feel he will guide us correctly now that we are at another crossroads.

The harvesting of the stem cells is scheduled for February 4th but at this stage our main goals are:

1. Bone Marrow Biopsy - get a “clean” bone marrow (no contamination) .
2. MRI – to ensure the plasmacytomas have shrunk significantly or even better, dissolved completely.
3. Skeletal Scan – to get a good indication that the bones are healing and that there are no further bone lesions.

Alpesh will complete his fourth cycle this weekend with no more treatment until we get the results from the above three (all being critical). The next two weeks are going to be hard.

Please continue to pray for us as that is all we can do for now ….

[by Sima]

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.