Chapter Two Begins

Another brief update before we go and meet the transplant team up at Hammersmith hospital this afternoon. Yesterday, following my 1st injection of cycle 8, we had confirmation of the biopsy results from my consultant. The residual myeloma cell count is currently 10%, down from the 25% I had following diagnosis. He again re-emphasised that this was a good response,  and importantly proved that my myeloma is chemo sensitive. The plan remains to have one injection of Velcade per week, which will take me to the end of November, at which point I will be handed over to Hammersmith for the work up tests, stem cell harvesting and transplant. I assume we will be given more details for each of these three phases this afternoon.

Talking high-dose therapy and autologous stem cell transplantation, I read through the infoguide provided by MyelomaUK yesterday. I've been putting it off because, a) I wanted to focus on the current phase of my treatment rather than rushing ahead, and b) quite frankly I knew I'd find the whole transplant process quite daunting. Yes, I am very worried.....not so much from a physical side effects perspective, but more due to a fear of the unknown....how will I react, how mobile will I be, what if things don't go to plan etc. Reading through the booklet was of course necessary, but it did make me quite upset. Thinking about the two new chemotherapy treatments that form part of the transplant process and the effects of the high-dose therapy was one thing, but the booklet also provide an overview of the enormous physical and emotional strain that we can expect, the recovery period at home and the long-term effects of this treatment, such as organ damage and secondary cancers.

But as I've said before, I can handle all of this, I will continue to fight the fight and I have complete trust and confidence in the medical team that are looking after me. I'll give you further details on the transplant process and plan sometime over the next few days (when my heart beat has dropped below 150ppm).

Just to wrap up, the side effects from the Velcade continue to build up. I've noticed more definite bone pain, increased overall numbness and fatigue as well as signs of peripheral neuropathy in my fingers and toes. I've also noted that my previous, almost non-existent, muscle tone has become non-existent, and as a result I've started to do more daily strengthening exercises (as clearly just lifting pint glasses is not working for me). Please note, for anyone thinking of taking advantage of this weakened physical state to bully me, I ask you to consider my current emotional condition before doing so. Thinking about it, that would probably just encourage you!!

Happy days

Just got off the phone to my consultant (yes....he called at 6:30pm) and he had good news from the biopsy last week. In his words 'only residual myeloma cells remained in the marrow, so the Velcade is doing its job'. He was very encouraged by the results. All remains on plan and cycle eight will now be spread over four weeks (one injection per week), starting next Monday, with the aim of keeping my paraprotein count stable until the stem cell transplant.

So, it's a happy family Hoban tonight. Still a long way to go, but tonight.....it's time for a celebratory beer!!

Consultant

Biopsy over and all went as expected. I felt pretty sick during the procedure, but managed to keep it all in though.....however, my nurses’ hand did get rather crushed during the process!! The biopsy seemed to go much quicker than last time, only taking about 10 minutes to complete. That said, when I tried to explain what it felt like to Len, all I could think of was the good old days of traditional dentistry, when local anaesthetic for deep fillings was a forgotten art form and the dentist seemed to take great pleasure in ramming the drill straight into a nerve. Not wanting to get too graphic, as the syringe punches through the bone into the marrow, you do experience that raw nerve sensation right down your leg. Still, as I said before, it's was all over very quickly....unlike giving birth (felt obliged to say that!!).

More importantly our meeting with the consultant on Monday left both Len and me feeling more upbeat and informed about my reaction to the chemotherapy and the next phase of treatment. He remains very positive about my response to the Velcade (both in my paraprotein levels and the shrinkage in the tumour on my sternum), hence the biopsy, to confirm the actual impact on the myeloma cells in my bone marrow. He re-emphasised that anything over a 50% reduction in paraprotein is considered a good response to the drug, and I'm fortunately in that position. He again confirmed that the plateauing was fully expected and the period of stabilisation that I'm now going through is positive, in that it indicates my body is still receptive to the drug. The plan remains to have an eighth cycle of chemo, though it may well be spread over 4 weeks to take me through to pre-Christmas. The current plan to complete the transplant early next year remains on track, and I'm booked in to see the specialist who heads up the transplant team at Hammersmith Hospital on 6th November. From what I understand, they'll be completing a number of ‘work up’ tests in December to ensure I'm in the right physical condition (read 'man' enough) to go through the high dose chemotherapy and stem cell transplant process.

Finally, last week was not a good week for us, and I just want to say once again how humbled and encouraged we've been by all the texts, chats, e-mails and blog comments that we have received. We can't explain how much it all means, knowing that we have your thoughts, prayers, support and most importantly, friendship. Thank you so much.

 

Biopsy

I knew that straw was looking pretty short before I pulled it out of the bucket yesterday. The lucky looser gets to have a bone marrow biopsy today.......oh the fun of it all!! Just to let you know, if you hear any faint background screaming at around 12:30 today, just block your ears and go about your normal business.

So, I'll give you more of an update following yesterdays consultation when I get back. Need to decide whether a couple of cheeky vodkas down the pub beforehand will help in any way....or whether to just rely on the local anaesthetic!!

Tears

Greeted todays paraprotein count with a few tears. I can't deny I'm disappointed that the count has remain at 11, suggesting I've reached this plateau. What I've got to do is remember that the paraprotein count is just a blood indicator and may not correlate directly with the concentration of myeloma cells in my bone marrow. Most importantly, the count is stable....it's not going back up.

But you know what, for whatever reason, today I don't care. I don't feel so positive, I didn't when I woke up, I don't now. Even writing this is making me feel upset, because I think more about what the future holds, not just over the next 6 months, but the next year, 5 years. What challenges lie ahead, how will myeloma impact me, what will my quality of life be like, more importantly, what will my families quality of life be like. Lots of unknowns...and today, I don't feel good about them.

What I won't allow myself to do is wollow....tomorrow is another day. However I will allow myself to get down about the situation I face sometimes, I need to cry, I need to feel not so damn positive about things all the time. It's a release and to not do so would be false and probably not healthy for me.

So, what can I say. I see my consultant next Monday and get his latest view on the results....but I'm assuming no change to the plan at the moment. Yes I'm disappointed....not to the extent I felt as we drove into Eastbourne earlier this summer...but disappointed all the same!!

Milkybar

We’re at the start of cycle 7 and it’s not just any ordinary chemo day. Today I’m celebrating my 25^th Velcade injection. Bit disappointed the hospital hadn’t taken the time to decorate the room or bake a cake…..anyone would think they’ve got something more important to be doing!! Anyway, putting all that to one side, they’ve taken my blood today and I should get the paraprotein results on Thursday. The last 2 counts have been eleven, so here’s hoping it’s gone down to 10. I also had my monthly dose of Zometa, the bone strengthening drug. I’ve been told I need to take this drug for the next 2 years. I tried to convince them that eating several Milkybars a month would likely have the same effect, but they just wouldn’t listen to my sound logical argument.

My cough/cold still lingers, however I got the results of my chest x-ray today. All clear from an infection perspective, but apparently I have long lungs. Didn’t have the nerve to ask whether this was a good or bad thing…….well Mr Hoban, most people with that kind of length generally end up lapsing into a coma by their 46^th birthday…oh well, we now await Thursday and the next paraprotein count.

I spent the weekend over in Sweden visiting my bruv and family. Also met up with some old friends and it was great to catch up with everyone again, talk about the good old days, whinge about the kids and wonder why they don’t behave quite as perfectly as we did when we were that age. Do they not realise just how lucky they are!! I even got to play golf…well, I say play…. hacking and blundering my way around a soggy field is probably a better description. Some would say a good walk ruined, but I actually had a really good time. Clearly not in the same league as lying next to the pool in the Caribbean, ice cold beer in hand, but you know what I mean. I didn’t even swear or break a club, that’s how much I enjoyed it!!

Finally, following the weekend away I’ve decided I must start to look more ill, especially if I’m ever going to secure a high sympathy vote. Too many comments on how well I'm looking surely can't be healthy for me!!

 

Chest infection

This damn chest infection just keeps on hanging around. After finishing the last lot of antibiotics on Thursday of last week, things took a turn for the worse over the weekend, culminating in a visit to haematology day care at Kingston Hospital on Monday for blood tests and a chest x ray to confirm whether my infection had cleared. Anyway to cut a very exciting story short, I'm back on the antibiotics for another two weeks, which will hopefully do the trick. And the perks of having cancer just keep on coming.......I'm now entitled to free prescriptions and the proud owner of an NHS Medical Exemption Certificate. Who’s jealous now then!!