Well I saw my oncologist a couple of weeks ago and my pesky MM cancer cells are misbehaving again!!
I start chemo on the 4th August. I will be having the Velcade injection but am unsure of the other meds.
I know I am not having the dex steroids as they do not agree with me HA! He has found some other drug called Methypred... which works similar to the steroids.
Also the cyclophosphates will be part of the cocktail.
This will be my 4th, yes 4th, course of chemo.... the others being in 2006, 2011 and 2012.
I have never finished a whole course of chemo yet as I end up with horrendous side-effects which result in me being hospitalised.
Wish me luck for this course.
Hi Leslie.
Good luck with the new chemo treatment. It may not be bad at all. I am on my second tour. Stopped in January and had to start in May again. I get Velcade and Dex. every Wednesday and for 48 hours-2 nights and days I cannot sleep at all.
Today Friday, I slept until 3:40 in the afternoon finally.
Let us know how you are doing. I sent you another email a few minutes ago, had not read this one.
Take good care and much luck with your pain.
Liz Schmidt in Pa
Well I started my 4th course of chemo on Monday.
My oncology nurse was made up to see me again to which I replied "better than the alternative" LOL
Because my 3 previous chemo's all went pear shaped they are giving me smaller doses in the hope that I will finally finish a course.
I am on the Velcade (Bortezomib) injection once a week
Also Cyclophosphamide and instead of the dex steroids I am having Methylpredisolone
Plus the "Dom Perignon" anti-sickness meds and heavy duty ones when they aren't strong enough.
Pain relief is my usual MST topped up with Oramorph and Co-Codamol (30mgs) which I find useless.
Sleepwise I have Nitrazepam although they often wake me up instead of knocking me out.
I used to have the Zometa IV drip - supposed to harden the bones and what did it do? Wreaked havoc with my back teeth and jaw. I had to have the teeth extracted and on the left hand lower side I have a whopping great hole which won't heal. My dentist here on the island of Jersey is one of the worlds leading authorities on the Zometa drip causing the dental probs. Apparently it was picked up in the US first.
Those of you who have been around these parts for awhile know I was first diagnosed in Nov 2006 and given 20-30 months to live. Well I fooled them.
I came within seconds of having my left leg amputated due to necrosis and other lovely hospital bugs. I actually walked into hospital in the December then flatlined a few days later and ended up flat on my back for 4 months. Flown by air ambulance to the UK for skin grafts which included having the lovely maggot treatment *bleugh*
If anyone should ever find themselves in Odstock Hospital (UK) I can highly recommend their mashed potato LOL
Mobility wise - I am not doing very well. I walk with the aid of 2 crutches all the time now and hospital visits have my husband or my mum plopping me into a wheelchair. I have all sorts of mobility aids at home and thankfully I can still get up the stairs albeit bent over using my hands. On bad days I come down on my bottom.
Unfortunately I am in constant pain in my back, legs and feet. Gets me out of doing the housework on really bad days HA!
Leslie, I have been keeping up with your trials for quite some time, you certainly get the brunt of it. I consider myself to be very lucky concerning this stuff as for now I have very few side effects. I hope this all goes better for you this time around, as you have seen some of the worst, maybe THIS Time it will be better. Please keep us informed as you are an inspiration to many. It stinks being pushed around in a wheelchair, been there and I did not like it. Made me feel helpless and dependent, but I did get where I needed to be. I finally went back to church this morning, felt great and was very refreshing. I had to avoid people and big groups since January. Had the transplant thing done so I had to wait until my immune system rebooted.
take care and keep strong
Rodney
Good to hear from you Rodney.
I am so pleased to hear you managed to get back to church. Did you have the stem cell transplant? (as it's called your side of the pond).
Over here they call it bone marrow transplant. I was ruled out for that straight away. Doesn't sound like much fun.
Have to admit the one thing I do miss is my independence. I used to walk everywhere and was into keep-fit, swimming etc in a big way. Did something once if not twice a day.
Now I am a big blimp. Mind you the steroids I had first time round - the dex - apart from giving me masses of energy also gave me a whopping great big appetite. I was known to cook nut roast, roast potatoes, Yorkshire pudding, vegetables and lashings of gravy at 7 in the morning..... just for a snack LOL Never did lose the weight.
I loathe asking people for help, even my husband. I am lucky in that I am one of those people who can sit all day without getting bored and now my pastimes include the computer, reading, watching TV and doing lots of puzzles and playing with the dog.
I'm wondering if all that exercise has helped my longevity.
Reading up on this this type of cancer and who gets it makes no sense whatsoever. Maybe one day they may discover what we all have in common.
Take good care of yourself and stay away from those nasty bugs
So good to hear from you, you are such a strong person, makes me proud to know you. Most people have no idea just what it takes to function when you have this stuff. I had a stem cell/ bone marrow transplant, its been 6 months and I still feel the effects, I get tired so easy, my activity level has fallen through the floor. I feel good, even though I am on velcade and revlimid and dex on the velcade days. Just about half numb and tired, I think dumb might come into play also as I make a lot of mistakes when doing things.
I love your menu, my favorite aunt was from England and would make Yorkshire pudding, I remember the smell of it vividly.
Take care my friend and get better
Rodney
Hello Rodney, Leslie and everyone else in our Myeloma Family.
Wanted to let you know that I registered and will be attending the International Myeloma Foundation 2 day seminar which will take place at the beautiful Westin Hotel in Center City Philadelphia on Friday and Saturday, August 23 and 24th.
Up to now there are over 300 people registered. It should be very interesting to hear what the mix of doctors and patients have to say. The registrants are coming from all over the country and abroad. The 2 days are very organized but there is also a dinner for all participants on Friday evening. We are all staying overnight at the Hotel.
I will be accompanied by my daughter who is an RN.BSN. and is looking forward to hear and learn as much as she can.
Are there any particular questions you would like me to ask?
Should you have any questions about the seminar their number is 1-800-452-CURE (2873)
www.myeloma.org they are out of California.
I am very much looking forward to this as I have not met a myeloma patient in person yet. Even at the doctors offices people sit in the waiting room, waiting to be seen, but no one speaks about their disease so no one knows anything about the person sitting next to them.
Best wishes to one and all
Liz in Pa.
rodney said:
So good to hear from you, you are such a strong person, makes me proud to know you. Most people have no idea just what it takes to function when you have this stuff. I had a stem cell/ bone marrow transplant, its been 6 months and I still feel the effects, I get tired so easy, my activity level has fallen through the floor. I feel good, even though I am on velcade and revlimid and dex on the velcade days. Just about half numb and tired, I think dumb might come into play also as I make a lot of mistakes when doing things.
I love your menu, my favorite aunt was from England and would make Yorkshire pudding, I remember the smell of it vividly.
Take care my friend and get better
Rodney
Hello Leslie,
I hope you are doing well with your chemo treatment. I will be thinking good thoughts for you!
Take care.
Karla
Sending you massive positive thoughts LeslieK!
LeslieK
So sorry to hear this. I am thinking real positive for you NOT to get sick ffrom treatment. I understand how you feel as you know they put metal plate and screws in my arm cause of myeloma tumor breaking bone that was weak. They told me also that I need to go back on Chemo I turned it down for a while so I don’t get burned out and I know some of these new chemo’s will help. Good Luck!
Donnaw
Stomach Cancer brought my Myeloma out of remission. I was doing great from Stem Cell Transplant for couple yrs. No back pain at all. Now I have lesions every where back, shoulders. They had to stop chemo for stomach to start Myeloma chemo. They put me on Carfilzomib, 10 mg.Dexamethasone & sofran ( nausea) I've lost 50 lbs. during whole ordeal. Average 1-2 lbs. week. Now this chemo starting to make me nauseated, no appetite. White counts dropped to 1.4 they don't seem to take that too serious. Suppose to have 9 cycles bring me to 89 lbs. if keep losing by time it's finished. Don't mind saying I'm scared.
Madison
Rodney, after my transplant. They never put me on anything. Stomach cancer was caused by Protonix. Acid Reflex medicine said, only for 8 wks. Take over that causes stomach tumors. They had me on it 3yrs. Kept telling me it was safe when I'd complain about how long I was on it. That was Gastro Dr..
Madison
Liz said:
Hello Rodney, Leslie and everyone else in our Myeloma Family.
Wanted to let you know that I registered and will be attending the International Myeloma Foundation 2 day seminar which will take place at the beautiful Westin Hotel in Center City Philadelphia on Friday and Saturday, August 23 and 24th.
Up to now there are over 300 people registered. It should be very interesting to hear what the mix of doctors and patients have to say. The registrants are coming from all over the country and abroad. The 2 days are very organized but there is also a dinner for all participants on Friday evening. We are all staying overnight at the Hotel.
I will be accompanied by my daughter who is an RN.BSN. and is looking forward to hear and learn as much as she can.
Are there any particular questions you would like me to ask?
Should you have any questions about the seminar their number is 1-800-452-CURE (2873)www.myeloma.org they are out of California.
I am very much looking forward to this as I have not met a myeloma patient in person yet. Even at the doctors offices people sit in the waiting room, waiting to be seen, but no one speaks about their disease so no one knows anything about the person sitting next to them.
Best wishes to one and all
Liz in Pa.
rodney said:So good to hear from you, you are such a strong person, makes me proud to know you. Most people have no idea just what it takes to function when you have this stuff. I had a stem cell/ bone marrow transplant, its been 6 months and I still feel the effects, I get tired so easy, my activity level has fallen through the floor. I feel good, even though I am on velcade and revlimid and dex on the velcade days. Just about half numb and tired, I think dumb might come into play also as I make a lot of mistakes when doing things.
I love your menu, my favorite aunt was from England and would make Yorkshire pudding, I remember the smell of it vividly.
Take care my friend and get better
Rodney
Hi everyone. yes, I am another with MM.. diagnosed around my 54th birthday last year. Stem cell transplant last November and currently holding at 2mg per litre of paraprotein (cancer cells). So I have been given a few more years to live. Leslie, it's breaking my heart to hear of your trials. I hope you are doing lots of relaxation and listening to joyful music to soothe your soul. You deserve that! I hope this round of chemo is successful honey. I have a fractured spine and spinal lesions and am on monthly zometa (for bone strengthening) and daily thalidomide (to hold the cancer at bay). This is my "honeymoon year' where I can still walk (with a stick) and can still cook and sit in the garden. I count every moment as a blessing because my future is so bleak. Bless you all for your bravery and may you all live long, happy pain-free lives