Newly diagnosed, and full of questions

Well I had retired  (early)  but to be honest the chemo which was given by injections in my stomach never affected me but everyone is different.   I would definitely have been able to work from home.  Hope this helps. 

Cheers that really helps, I feel like I need to get back to work for the structure in my life it’s driving me crazy just sitting around around, but work are adamant I cannot go back until I have had at least 3 sessions of chemo 

thanks

Yes I can see where they are coming from but if you can work from home that's brilliant.  It will give you something to focus on.  I hope you cope with the chemo, honestly it never affected me.  Stay positive. 

HI   Again,   i   have been self employed and a  big traveller for all my work,  EU  UAE  etc,    so  although i was

 "  retiring "   i wanted to keep a few favourite clients in Scandinavia,   and travelled just before my diagnosis,  it was tough to say the least,  but working from home     carried on,    and once client put me on a retainer,    as others say,  it effects us all in different ways,      the  treatment   did more to "  slow me down"  than the Myleoma,    the   treatment plan you will have  is  geared around you,   your health,   i  also kept active,  and i do believe this helped me on the road to recovery,        compared to 12 months ago,  i feel great,  other issues from the Cancer  made some  damage to my left hip,    but now they work on fixing this     with a bone strenghtening injection every 4 weeks,      i am in and out of the day case unit in about 30 minutes,      it is worth all the effort and  i am sure the others will say the same,

Kevin

I was recently diagnosed (June) as well, although it took 6 months of GP & physo trying to convince me it was just Sciatica until my hip fractured and a 3 week stay in hospital to find out!

I am on the RADAR trial so take slightly different drugs to the standard treatment path, but from talking to others side affects can be very indiviual to the person.
Iam 44 and luckily haven't suffered from that many (mainly swollen feet, fatigue/tiredness).
My consultant did say that as Iam quite young my body is more likely to tolorate the drugs than someone older so may not see the side effects so badly, so you might be the same.

Just keep an eye out if they give you Dexamethasone. I get a massive dose once a week as part of my treatment, its a Steroid to basically feel like superman for 3 days, then get withdrawl symptoms for the next 2 days (tiredness, moody, lack of motivation, pain from overdoing it the previous 3 days, brain fog).  Then the following week it all starts over again.

Main thing to do is listen to your body, do things when you feel you wan't to and can, and more importantly don't do things when you don't feel able.
I have re-arranged my week so when I am on the Dex, I do the more physical things such as mowing the lawn, a lot more walking about, DIY jobs trips/days out etc then block off the rest of the week for less physical and less time critical tasks as I know I won't have the energy and won't stress myself out trying to do something whilst feeling like crap.

Also accept that you will have good and bad days, don't let the bad ones get you down and don't fight it when you have one - if you need a nap, you need a nap, if you need paracetamol for the pain, then take it.
I was quite stubburn at first, kept wanting to maintain my pre-cancer routine, but had to quickly learn that I was doing more harm than good and I had to make changes to help myself.

I am on Amitriptiline at night for sleeping - only a low dose but its enough to keep any mild pain at bay and sends me off into a good sleep - also make sure your taking the Lenolidamide before you go to bed as that can make you tired as well, so will help with sleep.
Lastly keep an eye on caffine intake - i have found too much later in the day affects me a lot more than it used to!

Hi, and thank you so much for this, I am due to start the RADAR trail also in the next two weeks, I was also diagnosed in June, I have to say it’s refreshing to hear you appear to have a good structure around your treatment which is something I will be getting sorting straight away, are you due a SCT at the end of the 4 months?? This is what the RADAR nurse has advised me, I’m not worried about it in all fairness but glad I opted for the trail, am I right in saying they can treat you more aggressively?? 

You will probably be on the same trial as I am, (think its Myeloma XV).

So i didn't get many side affects on the first cycle, but got a few more on the second, so don't take for granted that you had an easy ride after your first.
Have just now started my third and so far all i have is swollen feet and tiredness.
As I said above, the side affects from the Dex are the biggest pain but if you know they are coming then you can be prepared - also don't get too carried away in the 3 days your on the dex as you will pay for it when it wears off! 

Structure is good, you have to have a blood test within 72 hours of your treatment/consultant visits (condition of the trial) as well as your Bortezomib injection once a week so factor in lots of trips to the hospital and back each week.

The trial isn't too much different from the 'cookie cutter' treatment except it can be adjusted for your individual needs as opposed to just following a standard treatment plan.  They can raise, lower, add and remove medications depending on your needs and how your body and cancer is doing which is much better than just sticking to the same thing no matter what.

So you have 4 x 21 day cycles of chemo - A lot of tablets to take each day monrning, tea time and bed time as well as paracetmol every day to manage pain.
I would suggest getting a medication box off ebay/amazon with days of week and times of day on them - when i get my meds I decant a weeks worth into the relevant sections ready so I don't have to think about what to take, when.

Then once the 4 cycles have completed over around 4 months you start the transplant process as long as your levels are all ok.
This consists of stem cell harvesting where they put a PIC line into your chest and harvest lots of good stem cells over the course of a couple of days.
Then there is a 4 week break where they let your body recover before they do the stem cell transplant which usually involves around a 3 week stay in hospital.
Again worth looking up about it as is not a great experiance (they basically kill your immune system before introducing the stem cells to build it up again) but hopefully after that you go into remission so your back to pre-cancer state (except for the reduced immune system).  They obviously do regular blood tests to check its kept at bay.  If/when it does start to come back they then consider 2nd line treatment which could be anything from more chemo to another SCT.

You will hear and see a lot mentioned about Paraprotiens, light chains & SCT.
Worth reading up about them as had no idea what people were talking about at first.
If you use facebook, I would highly recommend joining the Myeloma UK page, its only for UK diagnosed people and their partners and offers a lot of advice and support.

With regards to working - I have been signed off for a year, benefits cover quite well, I would highly recommend contacting Mcmillans benefit support to see as its admirable to want to go back to work, but with how unpredicable each day can be its not practical - also factor in your immune system will be impaired so need to be a hell of alot more carefull, and if its a physical job your a lot more at risk of breaking bones.

I just found out my paraprotiens are down to 3 just with the medication alone which is great so definatly not regretting being on the trial and make sure you ask your team plenty of questions if your unsure about anything.
Also try and keep track of things yourself such as meds, break weeks (they do give you a printed timetable). My hospital are great but I find myself telling them whats happening sometimes, or picking up my big brown bag stuffed full of meds only to find something missing!

Hope you get on ok, try to keep positive - your mental health can take a hit sometimes when you have time to reflect and think about stuff but the doctors are doing the best they can and being on the trial means your getting the latest treatment avaialble so very positive.

Honestly thank you for your in-depth response, this is exactly what I need, I’m generally a very grounded person, I am actually a nurse in mental health so have already spoken to my GP regarding that, but all the physical stuff goes over my head (probably shouldn’t but it does lol) however this reply is amazing and is exactly what I am looking for thank you.

Am I correct in saying that there are only 6 hospital in the country currently signed up to the RADAR trail?? I’m doing mine through James Cook university hospital in Middlesbrough. 

scott 

Hi in reply to your question I am retired so did not need to work but I don't think.i could have I got  s ct about 3 weeks ago very hard going I am now home from hospital no appetite and very tired I wish you luck in all your treatment etc