No problem Ian
Good luck with the treatment
All the best
Mick
Hi ime mick
may I ask how old you are?
Ime 10 years into myeloma and I have had 2 stem cell transplants..the first after the initial 6 month of chemo i think it was velcade the first treatment was (I’ve had the lot to be honest haha and I am now on pomolidomide for the past 15 months which is keeping the ParaProtiens (PPs) down but they will eventual go up again in my case as they always do..so I enjoy my remission time.
We are all very different and what treatment works well for one may not work well for another.
To go onto the stem cell and high dose chemo treatment in hospital(autologous) where your own stem cells are used.
This is the usual next step script to be honest.this treament totally wipes out all the myeloma cells..I had a great 2 years remission after that but again we are all very different..the myeloma by its nature always comes back but again we all all different so some people get years of remission..and it’s always best to do your research on here..but it depends on how high your PPs were when you were initionally diagnosed leading to your first treatment
The consultant will see if you are fit and well enough for the stem cell treatment.
I know this didn’t really answer your question but I think the vast majority of us will follow this script if deemed nessasary.
Hope this helps and hope others can tell you of their treatments on here which may help you..its very scary initially as we all know.
All the best
Mick
..yes I was put straight on chemo the first week of diagnosis as my para protein count was sky high..in the 70s.. I presented as very poorly basically on my backside when finally got the diagnosis..
…oh just seen your reply sorry…you have to do what’s best for you..I know that over the years with this..I get the best “remission time” when I totally through myself into my diet..I know how difficult it is making decisions around treatments and believe me I have had the chemo kitchen sink thrown at me so I have to try every other avenue..we are all different and have one goal..live longer..it is that simple..Iwas diagnosed with lgG kappa myeloma in september 2013 so not really clued up on the other types sorry..but I am sure some one with help you with your question..
Stay positive as much as you can..cancer thrives off stress so my research tells me..look after your immune system..help it with the foods..vitamins and minerals..I really hope this info helps..
Mick
Hi again..
Salmon steaks..omega 3 capsules/cod liver oil ..vit D tablets
I also have a spoonful of a hebak remadie medicine called ESSIAC.. (Rene caisse organic herbal decoction) purchased off eBay.
Veggie curry
Sweet potatoes
Carrots
Red cabbage
Red onion
Beet root
Olive oil
Red/green peppers (spicy the better)
Turmeric/cucumin powder
Garlic
Tomato puree
Cailflaw
Sprout
All done in slow cooker for the week.
..grill bell peppers side dish
Raw veg salad
Bell peppers..red onion..cucumber.tomatoes.steamed beetroot.cider vinegar.
All shook up in a Tupperware container.
oh red grapes..I eat this everyday now..Ime having a tumeric tea and detox tea (tesco) as I write this 🙂
Mick
Hi
Sorry to hear about your diagnosis…ime 5 years with MM
Had 2 stem cell transplants with numerous chemo..last chemo didn’t really work in March just gone so ime totally on a veggie diet now..
..go on YouTube and look at all the fruit n veg and other foods and drink to turn your body from acidic to alkaline..steam and juice..
I juice everything with a nutri-bullet juicer..about 40 quid Argos.
I do this and its helping me
..no refined sugar
..no processed foods
..drinking at least 3litrs of spring bottled water a day with slice of lemon slice of lime in.
Drink carrot celeray beetroot apple smoothy juice drink every day
..green teas/herbal teas with organic honey in..ginger root in
Plenty vitimin C
Turmeric/cucumin capsules..selenium and iodine supliments..flaxseed capsules..hempoil capsules..and CBD cannabis capsules off eBay..lysine capsules..all these help the immune system to become stronger..all from lidl and eBay.
Plenty of rest.NO STRESS.a positive mental attitude.meditate.exercise..walk in swimming..cancer don’t like Oxygenated body..steam room and sauna for the heat..
Fruit n veg..
Strawberry bluberry raspberry (all berries good .tangerines kiwis..avacardo.
Garlic in food
spinnage kale.broccoli sprouts.
dark chocolate..pumpkin seeds
This is what I’ve done and do and if nothing else I feel really good
And healthy so I will keep doing it..
I Go on youtube and check out foods that fight cancer..the truth about cancer is a good view.
Books I’ve read.
*food to fight cancer.Richard beliveau
*Rethinking cancer-Ruth sackman
*the only answer to cancer-Dr Leonard Coldwell.
As I say this is what I do and we are all individual so the choice will always be yours..talk to your family and loved ones and make informed choices about your own health…you are in control..think yourself cancer free..again I’ve done all the treatments and i now have to try all other therapies.
I have accupunture and reiki at the local hospice .this really helps me a lot..
Good luck and try not to panic
God bless
Mick
Hi
I have lived with myeloma for 4 and a half years diagnosed at 47 2013..i am now 51…same start as your sister..6 months on first chemo..then 2 weeks at the Freeman hospital Newcastle for stem cell transplant and high dose chemo…about a week before the stay in hospital your sister will “be hooked up to a machine to have her stem cells harvested..which means taken out..takes about 4.5 hours..pretty easy no drama..then the first day in hospital she will have chemo..day 3 she will have her stem cells put back in..the first week in hospital is ok..the second week she may feel a little tied and sick with the chemo..everyone is different of course…I was ok :)..hair does fall out but starts to grow back after 2 months..nice and fluffy :)..i then had 2 fantastic years of drug free remission…of course it comes back so I stated another 6 month of tablet chemo…then Christmas 2016 I had my second stem cell transplant and high dose chemo in hospital for 2 weeks…again same routine and 1 years remission this time..it came back and I am now on a drug called revlimed..i am still here:) and there are new drugs on the horizon..so the longer I live I may get these new drugs.it’s all about time and living longer
..look at diet..cancer fighting foods …fruits and herbal meds to aid immune system. All herbal meds i get off ebay (Thats something you can do for yourself and control)drink plenty water for kidneys..I drink 3 lrts a day…she and you can do this!! ..basically we all have no choice..trust consultants..and maybe learn to meditate..clear the mind and think positive..it helped me anyway (we are all different and what works for one etc..Good luck…
Mick x
Hi Pauline
My pp was around the 40 mark if i remember rightly when it came back last summer but I knew it had come back with the symptoms I got again …out of breath tired etc etc …and yes if there’s anything I can tell others is to enjoy the remission time.51 in Sept so can’t hang about so I am enjoying my simple life I have now tailored for myself ☺ walking my dog and enjoying peace and quiet is top of my list everyday …oh and the tennis..not just Wimbledon follow it all year around..been to Australia USA middle east far east Monte Carlo Rome Paris and now London… .all in glorious HD haha
Oh yes get your pond sorted that’s a priority ☺
Mick
Hi and welcome to the site 🙂
I was diagnosed Oct 2013 had 6 month tablet chemo them 1st stem cell April 2014..I then had2 years good remission until around summer time 2016(pp rose very quivkly in my case so then i was put on the velcade for 6 month followed by 2nd stem cell transplant over the Christmas and new year 2016/17..I am now in remission again so will enjoy it as long as i am aloud 🙂
We are all individuals so all have different myeloma paths…I do wish you well and keep try to keep as positive as you possibly can..maybe find out if there is a local myeloma group near you who you can contact and talk to…
All the best ..mick
Thanks Gregg
☺👍
Hi all..
Quick update…consultants took the decision away from me last month and said the allo would not be in my best interests to put me through it ..they just gonna let my remission run and then see what happens…to be honest Iam really pleased…
Thanks for your info it really helped . peace and good fortune to you all
Mick
Hi
I was 47 when diagnosed with my unwanted tenant in October 2013.. I have just had my second stem cell transplant at Christmas and I am enjoying my med free remission for how ever long it lasts..if there’s anything that i have learnt from this little blip in my health is to get on living as normal as can be in the remission time and don’t think about the relapse (as hard as that can be sometimes)..it will come back as we all know… but who knows what they might find in the near future with their ongoing research to help us evict our noisy unwanted tenants for good…
Keep as positive as you can with each day walking along the path of myeloma…it will twist and turn but be as strong as you can….it’s not all hills on this path there are also gentle slopes to stop and take time to enjoy the view x
Much love to you all
Mick
Hi claire..The mini allo sounds okay to me…well better than full 🙂 …claire it took me a full month when I got home to get the second hospitalization out of my mind. Think because I caught a cold/virus in there and was given penicillin that literally within a minute my body showed me and the nurse who administered it that I was allergic to penicillin!!..haha ..should have seen her face bless her as my face went bright red and ballooned with spots on .my full body was like that …so uncomfortable for about 3 days of the second week.. .I think i can laugh about it now but i didn’t then…”allergic to hospitals” I think should go in my notes from now 🙂
Good info from Scott about the milkshakes as I really struggled with eating food and the DLIs. I will ask about all this new info
…sounds like I am complaining but spending 6 weeks minimum in isolation would be difficult for me and that’s if everything does go to plan…so these are the things I have to weight up..It’s about wellbeing of the mind as well as the body for me..”decisions decisions” I was having a cuppa with a pal today and he couldn’t make his mind up on what to have…He said decisions decisions …I just took a deep breath and smiled …
Thanks Greg. ..Every bit of info helps me..my consultant said the same to be honest and the letter she wrote to my g.p of which I received a copy basically said what you have said..she highlighted quality of life rather than remission time.but there again they have to give us worst case scenarios . ..I know i have been very lucky with my remission compared with others and it just proves how individual myeloma is and that the final choice is also individual. .I have wondered why I got this at 47 while others got it at 70 and felt very cheated out of years… but you were 36 when diagnosed!!..so yes it’s all about living longer and we all want to do anything to get more years but it’s such a massive decision I know…I have just went along with what they said I should do in the past ..But my last stay in hospital kicked my backside 🙂 and I felt really vulnerable and scared of what was going into my body..I just feel the next step might be a step to far…They keep saying I am young enough to have the treatment but I know my body is starting to tell me ime not as young as they say I am haha…
Let’s hope and pray they get these new less harsh treatments they keep telling us about that are being worked on out to us as quick as possible …Ime really pleased you have got to a point where you have some normality in your life now Greg. .and long may it continue for you.. and all of us on this rocky road
Thanks Greg
Mick
Thanks scott your advice and knowledge of the allo is very helpful to me… the more info I get the better so I can make my choice…no mini allo was mentioned to me at my last meeting in January with my consultants so I will defiantly be asking about that …saying that they only have half an hour to tell me the worst of what can go wrong and give me the allo book to get info myself..like I said to consultant she wouldn’t make any commission selling the allo product haha…so that’s why I am finding out as much as I can before my next appointment at end of this month. When was your allo scott? As we all know its all about the remission time :
Thanks for the info…
mick
