18th July - I finally have a date.
I feel bad because everyday for the last week I have meant to post on here. And everyday has been as manic as anything and I haven't had a chance. I will try to remember what has happened!
It all started at my appointment on the 7th June. We discussed the peripheral neuropathy (from now onwards to be referred to as PN) in my legs and hands, and it turns out that they consider it quite severe due to it reaching my achy buttocks!! So we talked about it, and they gave me 3 options;
1. Take another week off - I really didn't want to hang around with this for no reason
2. Get going again with a once a week cycle at full dose
3. Forget the whole lot and go to transplant
In the end, we decided to try doing the full dose thing and see how it went. I have been on tablets to help with the PN and whilst these make me feel totally drugged at times, they seemed to be helping, so I was keen to give it a go. On the day, we agreed that if the PN got worse we would stop the treatment and go to transplant, and so on this basis, dates have now been set. Just in case people want to know, it will look like this;
14th June: Bone marrow biopsy
28th June: Meeting with Stem Cell Consultant and consent to be signed
1st July: Chemotherapy (done intravenously) - this will help to clean out the bone marrow
6th July: Self injection of growth cells for 5 days. These injections help me to create the new stem cells which will be harvested
11th July - 13th July: Stem Cell Harvest. Hopefully this will only take one day, but if I don't get enough from day one, they will ask me to go back the next day, and if necessary on the 13th. These stem cells will then be frozen until my transplant.
18th July: High dose chemotherapy (mephalan) - this cleans the bone marrow and zaps as much as possible. They basically give me as much chemo as my body can stand without dying as far as I understand it!!!
19th July (I think): Stem cells returned to me!
I think that I will have a few days of feeling ok, followed by potentially feeling like death warmed up for a few days. They recommend isolation although I am on a ward of 4 and am allowed immediate family to visit so long as they are not ill in any way, shape or form, and they don't bring flowers....no flowers for ages :-( They are normally the thing that cheers me up!!!
Anyway, so I go back tomorrow. I think they will stop the velcade as the PN has been quite bad for the last couple of days. I hope so now. I also go back for another bone marrow biopsy....this time I'm being given diazipan or whatever the drug is called that makes you happy! It is meant to relax me so hopefully it will!!! I hate BMB's with a passion and so does Nick as he normally walks out with a numb hand from where I've squeezed it when the screwdriver goes round!!!
At the moment I feel ok about the whole thing. That scares me that I'm not too worried. But I know it is the right thing to do, and the only thing that really gets me is how it will impact on my lovely family...mainly the kids. Hopefully I'll be back before they notice, but even Rebecca has been more attached to me recently so I worry that they will find it hard me being away so long. The next few weeks will be full of getting things straight....advice for anyone who is helping (e.g. my lovely sister who is flying over from Beijing to look after the kids so Nick can still work and come and see me), doing the paperwork (boring!) and doing those sentimental things like memory boxes, sorting out the photos and writing those horrid letters that I hope will never be seen.
What has made the whole thing a little harder is that my poor mum is quite ill. She was the person I talked about before, but I needed to wait until all our family knew to write anything specific. She was diagnosed with bowel cancer about 4 weeks ago and will have her op on the 27th June....I feel awful that I won't really be able to help her much. She was admitted to hospital on Thursday for 2 nights as she was anaemic and needed 5 units of blood in the end. She's still not feeling great and so the family are doing all we can to help her. It doesn't rain hey. Still, we will get through her and me, and I hope that perhaps this Christmas we can do a big family get together to celebrate and to pray for a better year next year for us all.
Better go.....................will try to write more often now though.........
Oh Deb, I am so sorry to hear about your mom, the timing is, as usual with anything myeloma related, completely pants!
ReplyDeleteHaving read your little timetable, it's amazing how much treatments vary from hospital to hospital.
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ReplyDeleteHi Debs, I've been following your progress alongside my own - Do you remember I came over from Myeloma Beacon to Myeloma UK just after you ?
ReplyDeleteI'm glad you are going in for transplant, it does seem you've had such a rocky ride with the first line treatment and to get that and transplant out of the way will hopefully mean a good length of trouble free living.
I'm writing from my hospital bed recovering from transplant and reading your description you've got it pretty closely. Expect you won't eat for about 5 days or so and will lose a good bit of weight (stone + for me).
Someone on the Myeloma UK forum (I think maybe perkymite) wrote a list of what to take to SCT, it is spot on and worked for me.
Best of luck with your harvest and transplant, I hope all goes well ☺
I will be intending that your medical team is spot on for you during all of this making all the right decisions and that once on the other side of the SCT you are feeling better and better every day... for the highest and best good of all concerned, so be it and so it is!!!
ReplyDeleteHi Debs
ReplyDeleteI too am writing this from a hospital bed. I'm exactly at the same stage as you - facing imminent SCT, although via a slightly different route - no Velcade for me! And no nasty neuropathy, thank goodness.
I'm in having the chemo prior to stem cell collection - still can't quite use the word 'harvest' without imagining a field of corn or something. LOL!
This bit's been ok. Chemo's in and done, just got some other fluids going in now to protect bladder and kidneys, but no ill effects so far apart from extreme sleepiness earlier. But then they woke me for obs and I'm awake, FBing and blogging. I suspect I'll feel tired over the weekend, but that's ok.
I can't imagine what it's like going through all this with children... your emotional life must be a crazy rollercoaster, not to mention the practical day-to-day stuff.
As for the bone marrow biopsy, I had my second one today before they gave me the chemo. I don't find them too bad - a bit uncomfortable and weird feeling and I managed not to crush my girlfriend's hand, nor kick the doctor, even though she wasn't as good as the one who did my first one - the day I was diagnosed.
Anyway, looks like we'll be doing this pretty much together, so if you want to stay in touch during the process, or read about my experience on my blog, please feel free. I have a provisional date of 11 July to go in for the actual transplant, so I'll be a week ahead of you.
Wishing us both luck and long remissions.
Love
Jet x
P.S. Can I subscribe to your blog so I know when you've posted a new entry? I added the subscription widget to mine, but you may not want to do that...
I guess every hospital has it's own "house specialties"
ReplyDeleteIt's seems a mess to me.
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