Life's Journey with Multiple Myeloma

Firstly we wanted to thank you all for all your supportive and encouraging messages after the fabulous PET scan results we got in July – we were inundated with feedback. Thank you so much! So, here we are in hot, hot, hot August. We had a wonderful time in beautiful Costa Rica with our friends. [...]

With that title, it doesn’t take a rocket scientist to work out that this post is packed with good news! So here’s a quick snapsnot of what happened after Alpesh’s tests in June. The MRI came back indicating that there was some kind of growth in the coccyx area. If you remember, that was the [...]

Bloodwork remains fairly normal, in fact the free kappa serum has gone back down to 17.4 mg/L. However, the free lambda serum has gone up to 21 mg/L … who knows what’s going on inside that body of his! The good news is that the M protein still appears to be at bay and both [...]

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 [...]

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, [...]

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 [...]

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 [...]

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 [...]

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 [...]

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 [...]

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 [...]

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 [...]

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 [...]

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 [...]

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 [...]

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 [...]

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 [...]

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 [...]

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 [...]

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 [...]