Thank you all, your support is truly appreciated. 🙂
Janet brought in my Dex yesterday but a nurse spotted them and locked them away until the pharmacist wrote them up… so I didn't get them until 4.30pm… which left me with 2 hours sleep last night.
I have just had a couple of hours and I feel a bit more human. I didn't take any paracetamol between coming home and 10am this morning and my temperature has remained normal… so it looks as if the drugs have won, Breathing normal and feeling generally okay, so hopefully on the mend.
Thanks again. 🙂
Dai.
Hi Bridget,
Just a quick hello in case you look in…. I hope that you are feeling a little better today. As Helen said, infections are so draining… on the body and on the spirit. If they can find an anti-biotic to clear the dreaded lurgy's up then you will feel much more like facing up to the medics and their search for some sort of maintenance regime.
My thoughts are with you every day… with much love and gratitude that you are my friend and mentor… you have always been in the vanguard of everything I know about MM and MMUK… your unconditional kindnesses and openness have been both a joy and an example to us all. So please accept our loving concern and our best wishes and prayers for you as you go through this stage of infection, discomfort, dis-ease and uncertainty.
Much love,:-)
Dai.
[quote]Many thanks to all of you for the warm welcome. I am afraid all the terminology is still quite new to me but I will attempt to tell you where I am with my journey.
I was diagnosed with stage 2 IgA MM and multiple lytic lesions. I had been limping around all summer having been told I had mild osteo-arthritis. In fact, I had a fractured hip which was picked up on the skeletal survey on the day of diagnosis. On my report it states that my IgA paraprotein was 34 +3g.
After having a prophylactic nail inserted in my right leg I then began my treatment which was Cyclophosphamide, Thalidomide and Dexamethasone on a rolling 28 day cycle. At the end of cycle 1 my paraprotein was 19, cycle 2 was 5 and cycle 3 was 0. Continued with 1 more cycle and end of April 2012 stopped medication and told there was no detectable level.
I am now booked for Autologous stem cell transplant on 18th May. I have had all the preparatory tests and my cells were harvested on 16th April. My children are finding it very hard and my husband is coasting along not really sharing his feelings, but I remain positive so far.
Sorry if I have got the wording wrong but hopefully you can understand what i am trying to say.
Jacqui
[/quote]
Hi Jacqui,
Sorry I missed this thread till now… so a belated welcome from me.:-)
Although I am sure that you have had your moments overall it seems you have had plain sailing to this point and the success of your harvest augurs well for this and any subsequent transplant in the future.
To be diagnosed in November and to be induced into the Stem cell Transplant on May 15th is some going… six months from door to door.:-D
I am not surprised that your children are finding the whole diagnosis and treatment processes hard to cope with… and your husband's reaction is not unusual either. They are no doubt still in shock and the speed and success of your CDT frontline treatment, followed by your harvest procedures, will have left them with as many if not more questions than answers.
One moment they are having to process the fact that their Mum (and wife) has a very serious disease and the next (for it will seem like that to them) you are going into hospital for a process which could lead to some sort of normality… hopefully a remission of long standing… with a shed load of new treatments on the horizon which could change Multiple Myeloma from a terminal to a chronic disease. (I believe that the status will change when the medics can show that they can get a median of approximately ten years overall).
Of course there are no guarantees… there are pitfalls and complications and many of us here have had to face them… but so far, so very good for you… and I hope and pray that it continues for you in that vein.8-)
Try and keep a diary or blog of your SCT if you are able… there are quite a few of us here who have done so and it can be both therapeutic and useful for others following behind.:-)
Remaining positive is the key and you seem to have that in the bag… the rest will follow as long as you take it easy and don't push or rush your recovery… allow for a year to be back where you were before your MM journey started…. with a completely new set of stem cells driving you forward like a Duracell Bunny.8-)
Regards and best wishes for the fifteenth.
Dai.
Hi Tina,
Dex will certainly energise you, as well as doing its job of killing off the cancer cells, it does its fair share of the donkey work but you have to remember that the 'energy' supplied by the Dex is a forced energy and while it might boost your energy levels it will not boost your spirit.
Engendering a positive attitude is the only way to boost your spirit. Knowing the medicines and drugs are doing their job, bringing down your PP's, helping to clear the decks ready for your SCT will help… you can trust that they are doing their job and the further they go the better you will feel… I imagine it will take 2 to 3 cycles before you start to feel the full effects. But it is up to you to shape your future progress in terms of spirit and positivity.
Don't allow negativity to cross your threshold… and this includes the loving care of family and friends who coo and cluck and tell you what a brave person you are to be fighting your cancer… they will mean well but you have to either tell them to treat you as the person you were or avoid them.
Yes, by all means update them on your progress but don't allow them to pigeonhole you as a victim… treating you with kid gloves and seeing you only as a 'sick' person. You have to accept that there is a very good chance that your treatment will result in several periods of remission as the treatments knock the PP's down and out… with all these new drugs… Carfilzomib, Pomalidomide etc., coming into force during your journey you could well be looking at several years, or more, of relatively good health ahead of you… several years of righteous, good living and life-sharing and all the negative behaviours will do is remind you of the tough regimes of the treatments as they get to work… well if that is what it takes then embrace them, love them and concentrate on the good effects and healthy remission that they will provide.
This is a new form of life but it is a life worth fighting for and your personal bond with your treatments and your personal relationship with life will depend on your engendering a good, healthy, positivity driven way of thinking and living… don't rely on the drugs, treatments and medicines for that.
Take it easy but take it and determine yourself to do whatever it takes to achieve this.:-D
Starting today.8-) 🙂
Dai.
Hi Bridget,
Sounds like its been tough for you recently… hang on in there, and may every day see you get some strength and with it positivity and hope.8-)
Much love petal.:-)
Dai.
Hi Terry,
Two things. 🙂
One in common with you re: the pulmonary embolism… I had one quite early in my journey, only four weeks or so after receiving high dose radiotherapy for a tumour on my spine (directly related or so I am told) of which I too was lucky to survive and received enoxaparin for 6 months, followed by Warfarin for 12 months followed by my Stem Cell Transplant (SCT) after which I was cleared of all treatment… until I developed a Deep Vein Thrombosis (DVT) last summer and was put back on enoxaparin.
The other was a near miss. That is I was put forward and accepted onto Onyx's 'Aspire' Carfilzomib trial in January this year, for 2 previously failed major treatments, in my case CDT, SCT & Velcade… but although I was accepted my urine needed to show 5% myeloma and despite 3 tries, 2 weeks apart, it failed to reach such dizzy heights before Aspire pulled the plug and declared the trial full and closed.
So the gamble of waiting for treatment to qualify for the treatment failed.. in a way… because even if I had qualified (all other qualifiers except for the urine were reached) I would still have to go through the randomisation of 50/50 selection for the Carfilzomib. The non-Carfilzomib arm of the trial was Revlimid and Dexamethasone… which was the next treatment lined up for me anyway.
So, I started on Rev & Dex on March 1st this year and I am currently on Cycle 3… after which, if it is deemed suitable, i.e. all bloods and levels okay, it will be my treatment for the foreseeable future.
I reported my efforts here and no-one came forward saying they were active on the trial but you never know… unfortunately we have new MMer's and people down the line, joining us every week, so you may well find someone coming forward.:-)
I hope they do.. and I hope the trial comes to you with no hold-ups or drawbacks. My consultant in Nottingham is very hopeful for Carfilzomib… and although I may have to wait a year… or two… so am I.;-)
Regards
Dai.
Hi Andy,
I am sorry that Revlimid has not had the required effect but surely they will give it at least three cycles before calling a day with it? I am on Cycle 3 of Revlimid & Dex… my light chains started at 311… went down to 156 and then a fortnight later went back up to 206… I was ready to be devastated but my lead nurse said that all the other bloods showed good signs and not to worry about it… she said that there is often a fluctuation with Revlimid as it settles into a pattern and an upward curve is quite normal.
I am still waiting for my free-light test to show the current reading but at my last consultant's meeting last week (at the start of Cycle 3) she said there was no need for an interim bloods test (as in Cycles 1&2) and she didn't want to see me for 4 weeks.
So I hope they persevere with you for at least 3 cycles… given the mercurial properties of the drug… and although your pp's went up, the reading is so small as to be insignificant… next time it could plummet… hopefully it will. 🙂
Dai.
Hi Andy,
Glad to see you back and viral free.. I have had my share of these culture shy infections that refuse to be named… about four or five in the past two years… I have been told that the causes are very rarely found.;-)
I am on Cycle 3 of Rev & Dex and hoping for a long-term relationship… I hope it works for you in the short-term by bringing down your pp's and setting you up for your SCT.:-)
Dai.
Hi Tina,
Welcome to the wonderful world of Dex [b]TM[/b]. Its the 'D' of your CDT… Dexamethasone.. a small but very powerful steroid that has a bit of a reputation for causing all sorts of small problems… from 'Moonface' to flushes and bad attitude to excessive sweating. But… it is also an excellent drug because it works. It boosts your system, fights the cancer and whatever the side-effects it will be one of your best friends throughout your courses of treatment.
Dex is okay by me, Dex is my friend.:-)
Dai.
Eve & Slim,
I don't know what to say… other than my thoughts and love and friendship are yours at such a terrible time. Please let us know what you can when you feel able.
Much, much love:-)
Dai.
Hi Sarah,
It's lovely to hear from you and life on the farm. I imagine Gordon is everywhere because he always was and even if he is only there in spirit his voice and his ways will be echoes on the wind and in the fields and yard… that I imagine, is inescapable.
I'm glad that Charlie has claimed his Dad's tractor and I am sure he thinks of Gordon often as he works it around the farm… and a new grandchild too… I remember you telling us of the untimely announcement.. but untimely or not s/he is here… and cannot help to bring some joy into your daily life… difficult then, wonderful now.
I think of Gordon and Peter very often… I had imagined them accompanying me through this mm journey and it was a powerful blow when they both went so quickly… it sobered me… worried me… but now I realise that it was/is not yet my time and I should be grateful… I am grateful, for every single day I wake, regardless of how I might feel.:-)
I live in a very rural spot here in the Vale of Belvoir (Beaver)… there are more farms per square mile as in any part of the UK I am led to believe. Janet and I love watching the seasons change by the state of play in the fields… crops and livestock tell their own story and I always keep an eye out for a red tractor… and on those rare occasions when I spot one I can't help but smile to myself… but it is for my eyes and minds eye only. We love to see the lambs, they never fail to delight us.:-) 😎
Keep well Sarah… you and Min and Tina are often in my thoughts.:-)
Dai. xxx
Hi Stuart…
I just went into my profile picture and noticed it was not centred… i.e. I needed to scale it down. It has worked for me, so this is what might be the problem with the others profile picture… to use the scale down until the picture is smaller but centred.
Its worth looking at.
Dai.
I had several side-effects with CDT but nothing major… at that time nothing to compare to it either.:-)
Thing is, while it was a bit rough at the beginning I have to take into consideration the fact that I started treatment with a Kappa Light Chain reading of 3,500… so obviously the CDT was having to work hard… and work hard it most certainly did because I was down to 'negligible' after only 3 Cycles and in full remission after 4, when it was finished. Due to a serious infection with my Hickman Line which had to be replaced, I missed my Stem Cell Harvest window and had to wait 3 months for my SCT. At the start of my SCT I was 6 months into my CDT remission and still going strong… I would have loved to have known how long that would have lasted as my SCT failed after only 10 months. I will never know but I still feel the rush into the SCT process was premature.
Dai.
Same here with Safari Stuart… sorry.:-)
Dai.
Hi Ann,
Welcome to somewhere you never imagined you would want or need… but for what it is, who we are and what you do now need this forum is the exact place to be.
You will find people at various stages of their journey and experience who will offer you advice and the sum of their experience of processes, procedures and the effects of MM on life in general… so settle in and question away.:-)
What is your husband's name and where is he being treated?
Dai.
