Category: Diagnosis

So there’s the low fat, the low carb and the low salt diets. Well, here’s a new one to add to the list – the low bacteria diet! Personally, I don’t even want to know that I’m eating bacteria… With the aggressive chemo, George will need to be very careful about what he eats and how food is prepared. No fresh fruits or vegetables or even flowers can come into the house.

I keep hoping that this is a bad dream – sort of like a medical Fear Factor.

On Friday, we will be getting the results of G’s bone marrow test. Based on all the results to date, his amyloid is focused on his heart and has extended into his nervous system. So far, his kidneys and liver are still functioning normally.

George’s team of doctors will review all the results, but at this point, their recommendation is the aggressive chemo and the start date is still to be determined (but will be within the next two months). There are patients with kidney failure that will take precedent. Apparently, heart failure is easier to fix than kidney failure – go figure.

We did start the conversation with Tom – when George told him that he’d be losing his hair, Tom said – “but you don’t really have any, so that’s no big deal”. So we’ll keep feeding Tom small doses of what to expect.

No appointments tomorrow, so I will be in the office. I am planning on working from home on Friday so we can zip into Boston to review the findings and discuss the treatment plan.

Here’s a saying a friend shared – plan for the worst and live for the best!

Today’s horoscope: Don’t expect your loved ones to be anything but completely intense now — and persistent, too. They’re trying to get your attention, and like little kids they’ll do whatever it takes to have it.

Another long day today – there are so many “ologists”!

Today a big focus was potential treatment options – we spent a lot of time with the oncologist on George’s team. Amyloid is produced in blood marrow and then deposits itself on tissues and organs. It is indiscriminate about the organs it attacks, but is more predominant in the kidneys and the liver.

George’s case is unusual because the amyloid went after his heart. Other than that, he is in great health. This makes George a great candidate for the most aggressive form of treatment – which involves injection of a growth hormone to stimulate blood stem cells; these are then “harvested” (which sounds quite gross) and preserved. Next comes two days of IV chemo – it’s an extremely high dose and equivalent to a year’s worth of oral chemo. Then the harvested stem cells are transplanted back into George’s blood system.

There are risks and potential complications – only 85% of patients will actually survive this initial phase and the risk is greater when the heart is involved. Another real concern is that chemo does kill all your white blood cells making your immune system completely defenseless – there is a window of about 6 weeks to 3 months when significant precautions would have to be in place (yup, I may have to actually clean the house!).

There are other treatment options – such as the low dose chemo and involvement in research meds – but once a treatment path is decided upon, there is no turning back.

The good news is that we are so close to Boston and would be able to travel back and forth fairly easily – we met a couple from PA who are staying in an apartment that the hospital had arranged for them. All their family is back home and they feel so alone.

We did attend the Amyloid Social – I wish we had skipped this depressing session! The motivational speaker talked about his amyloid experience, his stem cell rescue and his subsequent coma – how upbeat!

Tomorrow, we start the day with George running up and down faux stairs and having his lung capacity evaluated. Then it’s back to the “ologists” for more exams and hopefully some results.

We are trying hard to stay positive and hopeful and your support means so much to me and to George.

Email to friends, family and co-workers

Today we started the three day evaluation at Boston Medical – I am really impressed at how organized and friendly everyone is there. We signed in and were given a folder with George’s schedule (who to see when, where and for what). All kinds of information about what to expect over the next few days was also included.

The first stop was the blood lab – the perfect Halloween location! You know that a lot of blood is needed when they come over with a tray of vials. Then another exam (over the three days, we will see seven different doctors), vitals, an imaging test and then the bone marrow biopsy. That was the worst of the day – George was given a little something to take the edge off before the test (and where was my dose??). The doctor doing the biopsy let me stay with George – they withdrew some bone marrow (which looks like thick blood) and a bone chip. Results should be back by the end of the week.

Tomorrow we meet with three more doctors (a hematologist and an oncologist and some other ologist) and should be getting the results of last week’s fat cell biopsy. The day ends with an Amyloid Social – a coffee and cake way to say hello. My guess is that we’ll be skipping that!

There are so many new words in my vocabulary! If you want more words too – there is a Boston Medical website – www.amyloid.bu.edu/amyloid/amyloid1.htm

Thank you all for your continued support and kindness as my family goes through this – more tomorrow