Hi Jo,
Saw the consultant today even though I was feeling pretty s**t and the specialist nurse whisked me off and did my obs just in case. They were Ok, I think I am still coming back from the infection and suffering terribly with swollen feet at the moment which while not painful in themselves, do give all sorts of weird pains up the legs. I think it is because I am changing my posture to accomodate the fact that I am walking differently. Also have some PN and have to be careful that my foot is actually in contact with the floor at times. She has given me a low dose of water tablets to help, so fingers crossed. She has also changed my velcade to once a week which I am very pleased about as I think I will tolerate it much better that way and lowered my steroid dose. Makes the journey a bit longer, but if I am stronger that way I feel it will work better. No sartorial additions this time – it took me all my time to get my slap on before going to hospital today. Had to do that – can't risk scaring the kids and horses can I?
Keep well
Love Pat
xx
Thanks for that advice Eve. It really helps. I find it so confusing, as even though I had the fracture prior to being diagnosed with Amyloids, I had never had the pain like this last week. I am a bit confused with the next set of Velcade as well. Am taking oral antibiotics now for 10 days but they seem to think I will be starting the next cycle in 9 days time??? I see the consultant on Tuesday so will no doubt clear that up then. I will also try and have a chat with the specialist nurse on Tuesday. Do you know if you can defer or at least request deferred treatment by one week. I am hobbling around, weak as a kitten and can't see that sort of recovery in 9 days or am I just being a wimp?
Love xx
Pat
Hi Vicki, any small bit of laughter helps enormously I find but have found it hard to come by this last week. Been in hospital with a chest infection that I never thought could make you feel so ill! I knew I wasn't right on Sunday afternoon but took paracetamol and thought that would do it. Admitted on Monday with a soaring temp and such a low blood pressure they couldn't get anything out of me to test. Arm looks like an abstract painting at the moment with all the attempts. Anyway came home yesterday but had to make a trip to the walk-in centre after contacting the emergency doctor at 2 o'clock this morning. I have a T12 fracture which was not helped at all by the week spent lying/sitting about feeling so ill and the pain was awful. Paracetamol was just not touching it. Wonderful nurse practitioner gave me some co-codamol and a prescription for more. Took the pain away fairly swiftly but couldn't sleep after that. Bit fed up today, glad to be home of course, but fed up. Will find the smile again soon.
xx
Oh Tom, you never fail to encourage – you deserve a medal.
Hi Eve, I have followed your posts on here and know that Slim and you have not had an easy ride. It does help to share though and although not everybody gets everything, someone surely has and can reassure you.
I am finally feeling better 24 hours after in which I have slept a lot, shaked a lot and sweated ( do ladies sweat – perhaps it was glowed?) a lot. That probably means I wont sleep tonight eh? But at least I am now feeling better and that's the most important thing. I do think you have something in what you say about the hospital visits though Eve. I am fortunate in that I get my bloods done at the local walk-in centre the day before and don't have to go to hospital except for subcut velcade twice a week. But this week I was still going for other tests at hospital as well and to be honest I think the whole thing is too tiring when you are trying to get to grips with everything else going on. Next week (my week off from velcade) I have a consultant visit on Tues at LRI, two day visit to the Royal Free Hospital in London Weds and Thurs and a cardiac MRI at Glenfield on Fri. Not much of a week off really is it? Then on to round 2 of 8 with the velcade again the following week. That should be the end of most of the initial tests I think and it should get better from there on in. Lets hope so.
Hi Jo, I think we must have a fashion connection here – very spooky. I have also bought a couple of things in autumn colours recently and also considered the leggings – but in my case, my other half says the matchstick look for legs is not very fetching. So I am sticking to normal but maybe skinnier jeans instead.
Keep well everyone. Love to you all.
Pat
xx
Routing for you all the way Jo 🙂 🙂
Hi Pia,
So sorry to hear about your MiL. I know from reading on here that everyone reacts to the drugs differently and hope that she tolerates Velcade as well as I am at the moment. I had the second injection today and must say that unlike Tuesday, I had to have a little sleep when I got home and I do feel a bit 'weird', but have just put some rice on to cook to go with the Jambalaya I threw in the slow cooker this morning so I must be recovering now. My kidneys are at 50% function so nowhere near your MiL, but the docs all tell me the kidneys are really good at regenerating. Let's hope this is the case here:-) I wish you both all good things.
Love and hugs
Pat x
Oh Jo, what a shame:-( My kidneys are affected too, but are so far holding their own. What are they going to do about it?
Love
Pat xx
Hi Jo,
Nice to speak to someome with the same attitude towards this stupid age thing as myself. It made me laugh when you said about wearing bright pink – guess what I bought today? A bright pink fleecy top to cheer me up now it is getting a bit cooler and pair of purple jeans. Let's hear it for the never get olds 😀
I don't have Myeloma, but AL Amyloidosis, which while not cancer, has essentially the same treatment as the bone marrow produces proteins which attach to organs as opposed to MM where the bones are affected. The journey is the same though. I have had to have VCD as my heart is involved which apparently ruled out CDT but the drugs do the same thing just in a different way. Glad to hear you are not on any treatment now – can't wait to say the same, but with 7 more cycles to go that is a little way off yet.
Look forward to speaking to you again and keeping up to date with fashion tips 🙂
Love Pat x
Hi Megan,
It's encouraging to hear that Phil is also getting very few side effects. I echo your thoughts on the long may it continue 😀
Pat
Hi Michele,
Thanks for your comments. I have just spent the first part of this morning getting jumbo portions of a good hearty stew going in one slow cooker and a similar amount of savoury mince type mixture in the other. Will freeze them down later today because as much as my other half is wonderful and has taken on so much more just lately, we both know that to let him near the cooker for anything else but poached eggs would be detrimental to health for both of us!:-) I feel that I need to make sure that everything is as up to date (domestic wise) as possible, in case I'm not able to do much after treatment – and – I have to keep busy so that I am not thinking too much. I know I will be fine when it starts, it's just this bit that takes some dealing with.
Will let you know how it goes after Tuesday.
Love and hugs to all.
Pat
xx
Flippin eck Peggy! Do you know if this happens to everyone on VCD? I start treatment on Tuesday for AL Amyloidosis and was hoping I would keep my hair this time. I had breast cancer in 2003 and lost my hair then. Not insurmountable, but we are coming into winter and it will be a bit cold to say the least.
As for the dry, brittle hair Faith and Janet, have you tried some of the oil treatments on the market? Hope you find a solution.
Pat
Thanks Michele/Tom. Yes it is like MM and so is the treatment. Nasties in the bone marrow produce proteins which attach to and impair the function of various organs. Until I go to Royal Free and have this special scan they are not sure exactly which organs are affected, but so far it seems to be the kidneys and the heart and possibly the spleen. There seems to be a little activity on this forum under Related Conditions but I would prefer to stay 'mainstream' as it were.
I go to see the nephrologist today to get complete results from the kidney biopsy and have a spinal MRI this afternoon for the vertebral fracture. Apparently this is due to Oesteporosis and not AL, but has to be fixed because of the back pain. Doc has also put me on a course of vitB12 injections and vitD and calcium tabs to strengthen the bones as my levels were very low. Not starting treament yet until I have the heart MRI and the special scan at the Royal Free. I think then it is tailored to where it is and the amount of damage done to the organs. I have to take the information in little bites or it all gets a bit much:-/
Anyway, overall much better. Girding my loins etc. (not a pretty sight I must say!) and setting my stall out for the journey.
Thank you for support and kind wishes. Friends who join your journey lighten your load, and for that I cannot thank you enough. xx
Asolutely! That's just what I was telling my other half when the MRI appt. came through this morning. He is getting all worked up about it, but that's pointless and such wasted energy. The more information they have, the better they will know how and what to treat I say. But yes, I am a bit fed up with all the tests and secretly a little bit scared. Roll on next week.
That's really great Michelle. My NHS GP was great in spotting it from the blood tests I had for something else and although she referred me on a 2 week cancer referal, by the time the hospital contacted me within the 2 weeks, it was another 2 weeks before I saw a specialist who ordered all the tests. So far I have had ECG, kidney scan, kidney biopsy, skeletal survey, bone marrow biopsy, 24hr urine and still have to have an MRI and an abdo ultrasound, and numerous blood tests of course. I think the problem is that they are not sure it is Myeloma and think it could be Amyloidosis. My kidneys are certainly affected and are at 50% efficiency at the moment. The tests just seem to be so spread out, but at least it is getting towards the end now. I suppose the kidney complication is not helping as that involves me attending a different hospital.The notes seem to travel from one hospital to the other which makes me wonder why they do not make use of scanned documents and electronic transmission? Still, as I said earlier, I am close to getting a diagnosis now and at least then I will know what I am facing. I really do not like this in between time though. Staying positive is really hard and I feel that I have receeded into a little no-mans land where things are washing over me somewhat. Otherwise I think I would stress too much and I am sure I will need all my energies to fight whatever it is.
Thank you everyone for caring enough to share your experiences with me. I truly hope I can do the same for others. xx
Thanks to you all for your positive comments. I saw the blood docs yesterday and the whole gamut of tests have now got under way which is a positive move. However, the consultant is of the opinion that it is more likely to be Amyloidosis than Myeloma. I had to go and look this up when I got home as I had never heard of it before and the diagnostic tests seem to be very similar to those for Myeloma. While I am still no further forward, I have to say that I do feel better knowing that the wheels are in motion, or maybe I have decided that worrying achieves nothing, so I am just sitting back and going with the flow! My good friend, who actually researches and develops cancer treatment drugs, gave me an added boost by saying that if they were panicking about anything I would have started treatment already – another positive! It's a long journey isn't it?
Love hugs and thanks to you all.
