As I said in my last post, we were awaiting for a CT scan and on Tuesday morning we had a call from K-W to report that afternoon for a CT scan and to wait while it is read and then see Dr. McCarron. My niece, Cathy and Christine, were here for a visit from States and they had just come over for a visit and we had to cut it short as we were heading off to Kitchener. The CT scan was done and it came back normal. What a relief that was as Brian and I were both feeling a little nervous about what the results may show. Then back to see our ophthalmologist, Dr. Johnson, on Wednesday who feels that Brian just has an episcleritis or uveitis of the eye of unknown origin and he put him on some Tobradex eyedrops every two hours for a couple of days. In the meantime, Dr. McCarron was not feeling comfortable herself that the eye was infected and we had finished the antibiotics from the hospital stay, so she decided to give him another 7 days of a different antibiotic. Anyway, his eye does seem to be getting better now but still not 100% yet.
Then off to see Dr. Marcellus (hematologist/oncologist) for our stem cell consultation in Hamilton on Thursday. Breanne came with us and thank goodness she did as we would have struggled trying to find Juravinski Cancer Centre on top of the mountain. Of course, Breanne knows that area well since she went to Mohawk College but once again we were having to figure out a way to get around yet more road construction. It seems that every city is tearing up main artery roads and when you don't know the city, it makes it a real challenge finding your way around but Breanne managed to figure it all out and we arrived on time.
Our consultation was long and once again we were given so much information, it was quite daunting as stem cell is not going to be an easy thing to go through. They emphasized that stem cell transplant is not a "cure" but it can give the longest remission times and helps to keep the disease "controlled". It is up to Brian if he wants to go this route and if he decides yes it is what he wants to do, then all other conditions have to be met first. He has to have the 16 weeks of CyBorD chemo first and be able to tolerate it, then because his myeloma is the "nonsecretory type", he will have to have another bone marrow biopsy at the end of it to make sure that the chemo was successful. As I had indicated in earlier posts, Brian's type of myeloma does not show up in the blood or urine and it can only be detected through tissue diagnoses. So if he passes through tolerating the CyBorD for 16 weeks and the bone marrow shows it works, then he goes for stem cell retrieval. This also has some limitations as they have to get at least 2 million stem cells but prefer to get 5 million. They will do the retrieval over a two day period and as long as they get the minimum of 2 million cells, it is frozen, then Brian will be admitted to hospital for two weeks while they administer Melphalan - very potent chemotherapy drug to rid his body of any cancer cells (but this also rids the good cells). Once the Melphalan has done its job, then re-infuse Brian's stem cells back and it takes anywhere from 3 - 6 months for these stem cells to do their job in bringing back all his white cells again, sometimes this can take up to a year but as each day passes, the patient does start to feel better. The risk is that myeloma can return at any time, sometimes only three months later, sometimes up to two to 10 years later. They certainly don't beat around the bush with all that they tell you and during this time the patient does not feel very well and the risk of infection is high which can complicate things.
Our consultation was long and once again we were given so much information, it was quite daunting as stem cell is not going to be an easy thing to go through. They emphasized that stem cell transplant is not a "cure" but it can give the longest remission times and helps to keep the disease "controlled". It is up to Brian if he wants to go this route and if he decides yes it is what he wants to do, then all other conditions have to be met first. He has to have the 16 weeks of CyBorD chemo first and be able to tolerate it, then because his myeloma is the "nonsecretory type", he will have to have another bone marrow biopsy at the end of it to make sure that the chemo was successful. As I had indicated in earlier posts, Brian's type of myeloma does not show up in the blood or urine and it can only be detected through tissue diagnoses. So if he passes through tolerating the CyBorD for 16 weeks and the bone marrow shows it works, then he goes for stem cell retrieval. This also has some limitations as they have to get at least 2 million stem cells but prefer to get 5 million. They will do the retrieval over a two day period and as long as they get the minimum of 2 million cells, it is frozen, then Brian will be admitted to hospital for two weeks while they administer Melphalan - very potent chemotherapy drug to rid his body of any cancer cells (but this also rids the good cells). Once the Melphalan has done its job, then re-infuse Brian's stem cells back and it takes anywhere from 3 - 6 months for these stem cells to do their job in bringing back all his white cells again, sometimes this can take up to a year but as each day passes, the patient does start to feel better. The risk is that myeloma can return at any time, sometimes only three months later, sometimes up to two to 10 years later. They certainly don't beat around the bush with all that they tell you and during this time the patient does not feel very well and the risk of infection is high which can complicate things.
So we left the appointment with a booklet in hand going over all that they told us and Brian was feeling a bit overwhelmed by it all. By the time he got home, he had a very bad headache and had to lie down.
Having said all the above though, Brian wants the stem cell and is ready to go through all the steps needed to get there. So we are back to chemo with CyBorD on Monday (Aug 29) and we hope he now goes through the next few weeks without any major problems. The doctor is holding off on the Neupogen if she can; so after chemo on Monday, Brian has to get more blood work to see if he still has enough neutrophils and if all is going okay, he won't need the Neupogen but if they have fallen too low, then Neupogen will be given on Thursday by CCAC.
I know that I will feel better about this whole thing if Brian does well next week and continues the subsequent 16 weeks without an issue. Of course, they say that what happened to Brian was "highly unusual" for this type of chemo to completely deplete his neutrophils. I think I am getting tired of the words "rare" and "highly unusual" as it seems that everything that happens is actually not suppose to happen!
So that is it for now, I hope this is not too boring for people that want to keep up on the news. I won't blog again until we get through another week unless we run into problems; so if you don't see anything written, that is a "good sign" that things are going well!
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