A long slog.

[TerrySmith]

Hello missytwizzle,

Thank you for your very good wishes.

Being new to this 'game' I'm still coming to terms with the procedures. I know they're trying to reduce the light chains as quickly as possible but how is the success or otherwise of this determined? I'm guessing its via the weekly blood tests.Whatever, I'll ask my haematologist next Wednesday.

Incidentally, did your husband find that the Velcade injections made him tired? For instance, after Wednesday's injection I didn't feel too bad yesterday morning so accompanied my wife to the supermarket. It involved an hour or more of easily-paced walking but I believe I perhaps overdid it as for the rest of the day I felt 'whacked'. Last night I slept for ten hours solid. I'm going to take things easier today.

The best of wishes to you both and here's hoping your husband receives good news from Treliske in the New Year.

[missytwizzle]

Hi Terry,

Hope you are feeling less tired today.
My husband and myself always felt extremely tired after spending most of the day at "Treliske" on his treatment days.It can be a very long day waiting for  treatment, so I am not surprised you are feeling tired.
 
He found that  a good nap in the afternoon helped.He still finds that he needs to take a nap most afternoons.

At the end of each treatment cycle my husband sent blood samples to the NAC.
Did the NAC give you blood bottles for this purpose?
These blood samples are checked to see if your light chains have fallen,and this is how they determine if the treatment is working.
If you were given blood bottles, you also should have been given treatment forms,at the end of each cycle ,give one to your consultant, who will fill it in for you, and then add it with your blood sample to post in the package.

It is early days for you, and you can feel in a very lonely place at times but at least we have friends on this forum who are all coming to terms with this cruel disease, and fully understand our hopes and fears.

All the best.

[David]

Hi Terry
During treatment my light chains were checked at the end of each cycle (i.e. every four weeks).
I did not experience any significant tiredness from the velcade though it was a convenient domestic excuse for having a nap if there was washing up to be done 
Keep us posted on progress
Best regards
David

[TerrySmith]

Good morning missytwizzle and David,

Yes, I was given blood sample bottles at the NAC along with half-a-dozen treatment forms. I'll be sending the first of these off to the NAC on Wednesday next week, at the end of the first cycle of treatment.
As after my initial Velcade injection, I didn't feel so tired after a couple of days and this morning, Sunday, I don't feel too bad at all. I'm guessing it's all down to the uniqueness of the disease and how it affects us, and how each individual reacts to their medicines.
Thanks for your encouraging comments; I'll certainly keep you all posted.

[TerrySmith]

Good Morning Each,

As promised a quick update on my chemo regime. Owing to a misunderstanding on my part, and contrary to what I said earlier, I have to have five, five-weekly cycles of chemo with the fifth week free from Velcade; not five, three-weekly cycles without a break as previously advised.
I received my fourth and final injection of Velcade of the first cycle yesterday so next week will have a 'week off'. At that stage I'll send off my first blood sample and form to the NAC and await results. I must say that following each injection I've felt increasingly 'groggy', especially for the first couple of days following which there are some days better than others.
Earlier this week I had a phone call from Darren Foard at the NAC. He wanted to know if I'd started my chemo and if so how was I coping with it. He made the point that some days will indeed be better than others whilst on others I might feel quite rotten. Frankly, this is no different from what I expected but if it does its job in the long run then it obviously has to be worth it.
I hope these comments won't be off-putting to others who are facing chemo;and given that as each case is unique others may well react differently and suffer no nasty after-effects. Reading through some of the other posts I gather this is sometimes the case. Whatever, I'll keep you posted of developments.

[David]

I wonder if it is the velcade or the thalidomide that causes the grogginess.

[TerrySmith]

I'm guessing it's the Velcade, David, as the grogginess tends to ease after a few days whereas I take the Thalidomide every night.

Best Wishes

Terry

[TerrySmith]

As promised, an update on my progress to date. Following my first cycle of treatment I was delighted to learn that my kappa level has fallen from 1,205 in mid-November to 297 late-December, a drop of 75%. On Thursday my haematologist told me that since then it has probably fallen even further. I'm not getting overexcited but I'm told this result is very encouraging. On the debit side,my kidneys are still balanced on a knife-edge. I had the second Velcade injection of my second cycle of chemo on Thursday so feeling a bit groggy at present. Otherwise not too bad.