Hello All,
As you might expect Cromer crab & fish&chips were superb as were the settings & Norfolk generally.
I spoke to my Consultant on Tue. as planned & she told me there is no definitive level of Paraproteins that will trigger any given treatment. Each & every patient will be judged on their particular MM presentation & medical history, both MM related & generally.
For myself it goes back to how I presented when diagnosed, what pain I was experiencing & what bone damage had taken place. Then, my Paraproteins were around 26, there had been damage to 3 vertebra & the pain in my lower back was quite bad but manageable.
My Consultant felt that we should not take the risk of waiting too long before beginning Rev/Dex because we may end up in a position where we wished we had begun earlier with myself suffering, potentially, unnecessary pain & damage from the ‘squatters’ progression.
My Paraproteins from last weeks bloods are now 12.4, from 10.8 4wks ago, & thus we have agreed to start Rev/Dex on the 14th Nov.’17, I hope the Paraprotein info. is in some way helpful to others but as said there do not seem to be many hard & fast rules to MM.
Regards & Be Lucky,
Ian.
Thank you for your information Peter, very interesting, recent bloods were taken from me on Thursday last and my Consultant will be giving me the results on Tuesday via a telephone consultation as we will be in Cromer for a few days, which again reinforces what she said about there not being great urgency to begin Revlimid/Dex just yet.
As has been said many times MM is very individual to us all & I hope I will be able to ascertain my Consultants plans for me on Tuesday, my feeling is that a lot will depend on my current Paraprotein levels & how quickly the squatters are trying to re-populate me.
Cromer crab & fish/chips here I come, first things first.
Hi,
Thanks again Annette, I was thinking you might have been on some sort of trial because of being on Revlimid for so long, I will post when I get started on said treatment.
Susan what can I say, your knowledge appears very good indeed or else mine is particularly poor.
Thank you for your input, you have certainly included some useful information, for others as well as myself. I will keep positive going into the next treatment but what I am getting from other MM sufferers is how very individual the disease is to each person, so different in presentation & particularly changeable in so many ways. Thank you for your responses.
Hi Annette,
Wonderful to hear your MM has been under control for 8yrs, really good to hear, as for your numbers rising I wish you the very best in regaining & maintaining that control.
It has been suggested my starting dose would be 25mg & adjusted accordingly if I respond badly for whatever reason, this may be my dose for approx. 1 yr. after which it could be reduced to around your dose of 7.5mg.
As with my 6 cycles of VTD & SCT I will begin this next phase positively but realistically, I can but hope my next treatment regime suits me physically & brings the ‘squatters’ under control as in your case Annette.
Regards,
Ian.
Hi David,
I guess it is safe to say that it is good that you have found this website where there is a wealth of information, people to contact for various reasons who work with & for Myeloma UK & of course the forum where it’s possible to enter into discussion with many people who have Multiple Myeloma or people closely associated them.
Personally I was diagnosed in Jan. 2016, 6 cycles of chemo(VTD) followed by a SCT at the end of Sept.’16, I’m now about to get the results of tests(today) which will indicate how well my treatment, so far, has been.
Right now I feel fine, I know that it is a game of roulette, in that even if the squatters are gone or just about gone, they will return at some point, it is all about time, how long will I get before treatment begins again.
I try & push that to one side & just get on with enjoying my life, family & friends, after all we are no different than anyone else in that nobody really knows when their number is going to be called so I will continue to be as “normal” as I can, for as long as I can.
Some say our bonus is that Myeloma gives us time as opposed to our lives ending suddenly but I think there are pro’s & con’s to that, it depends very much on your viewpoint.
Well David hopefully others will respond to your posting soon or have already emailed you directly, maybe you could post on a specific subject or maybe respond to someone else’s posting.
I do wish the very best though & be lucky.
Ian.
Hi Chris,
Really sorry you were only in remission for 18 mths, its a game of roulette, we all hope for a long period free of the squatters but as is said “it is what it is” short or long period.
I agree with Jan in that if bone damage is apparent again then maybe seriously consider going with the mthly Zometa again.
We’re never going to know if any choices we make during treatment are going to be the most beneficial for us, we can only take on board all the available info., talk it over with our consultant, our families & partners before coming to an informed decision about what we want for ourselves treatment wise.
My wife & I were chatting about thoughts & feelings with regards to the cancer & everything associated with it just recently & we were in total agreement that only the people with cancer can truly understand the thoughts & feelings we go through & exactly the same applies to what our partners think & feel, am I stating the obvious, maybe.
I only say this after reading that you weren’t sure about a second SCT, it got me thinking about my own feelings about any further SCTs.
You’ll work out whats best for you & whatever that is my best wishes to you & be lucky!
Ian.
Hi Susie,
Its always difficult to know what to say to news like yours, some will talk about what a bad time they are having or have been through which is not what you want to hear really, right now its about you, not me or anyone else.
Rest assured many people on the forum will have read your post & really felt for you because we are all going to be in the same position at some point.
The shock must have been intense, you’ll have your down time but you’ll soon pick yourself up & get on with what has to be done because thats what we do, you are still here & most people would say thats enough. Its not always but thats another story.
Take the very best care Susie, many forum members thoughts will be with you.
Ian.
I have absolutely no idea what happened with my posting above? I hope readers can still work out what was posted, very strange.
Ian.
<p style=”box-sizing: border-box; margin: 0px 0px 17px; padding: 0px; font-size: 13px; direction: ltr; font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; line-height: 19.5px;”>Hi Kitson,</p>
<p style=”box-sizing: border-box; margin: 0px 0px 17px; padding: 0px; font-size: 13px; direction: ltr; font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; line-height: 19.5px;”>I was diagnosed on 19/01/16 just short of my 63rd birthday & underwent 6 cycles of VTD followed by a SCT at LRI.</p>
<p style=”box-sizing: border-box; margin: 0px 0px 17px; padding: 0px; font-size: 13px; direction: ltr; font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; line-height: 19.5px;”>I was discharged from LRI, following the SCT, on 12th Oct.’16 after 10 days!! I was so pleased to be going home & with getting off quite lightly with regards to Melphalan side-effects, I actually had no mouth or throat sores, no sickness & came out of hospital the same weight that I went in!</p>
<p style=”box-sizing: border-box; margin: 0px 0px 17px; padding: 0px; font-size: 13px; direction: ltr; font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; line-height: 19.5px;”>I was told I probably came through the SCT relatively well because I was quite fit & active & used to a good balanced diet, though I have always been a great advocate of ‘a little of everything & no excess’.</p>
<p style=”box-sizing: border-box; margin: 0px 0px 17px; padding: 0px; font-size: 13px; direction: ltr; font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; line-height: 19.5px;”>I believe we are told the, almost, worst case scenario though all the negative side-effects they tell us about are possible & some SCT patients do have a horrible time. As said previously we all respond differently, my best advise is to be as active as you can with regards to self care & movement around your environment & follow the advise of the experienced staff as they have helped many people through SCT treatment & have a wealth of knowledge.</p>
<p style=”box-sizing: border-box; margin: 0px 0px 17px; padding: 0px; font-size: 13px; direction: ltr; font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; line-height: 19.5px;”>On reflection what was the most important item I took into hospital with me? A small tub of Sudocrem, the backside got very sore & tender, for me a must have!</p>
<p style=”box-sizing: border-box; margin: 0px 0px 17px; padding: 0px; font-size: 13px; direction: ltr; font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; line-height: 19.5px;”>I really do hope your stay in hospital is as short as possible & not too difficult, all the very best.</p>
<p style=”box-sizing: border-box; margin: 0px 0px 17px; padding: 0px; font-size: 13px; direction: ltr; font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; line-height: 19.5px;”>Ian.</p>
<p style=”box-sizing: border-box; margin: 0px 0px 17px; padding: 0px; font-size: 13px; direction: ltr; font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; line-height: 19.5px;”></p>
Hi,
Many thanks to Greg, Jan & David for your replies, you raised some good points.
I did suffer the same side-effects while on my chemo cycles prior to my SCT & always remember that I felt pretty rubbish 2 days after every Zometa infusion but at that time I was on so many drugs it was always going to be difficult to determine which drug was responsible for which side-effect.
I totally agree that our bodies change due to the SCT procedure & I guess to a lesser degree to the chemo cycles as well, there are many stories from SCT receivers of various changes that have occurred, my most noticeable ones are that my skin is more sensitive & dryer, varicose veins have appeared on my legs & of course the proverbial & expected reduced strength & stamina.
But yes I may be experiencing added side-effects due to changes associated with the SCT & these may reduce as time goes by & then my mind begins wrestling with “so maybe I should stop the Zometa for 6 mths. & then resume or only resume when I come out of remission?”
As to my breathing specifically, my breathing was very good prior to my Zometa infusion 2 wks. ago but 2 days after it my breathing was noticeably depressed, ergo I can only really point to the Zometa.
Ian.
Hello To All,
My 1st post, I was diagnosed on 19/01/16 just short of my 63rd birthday & underwent 6 cycles of VTD followed by a SCT at LRI.
I was discharged from LRI, following the SCT, on 12th Oct.’16 after 10 days!! I was so pleased to be going home & with getting off quite lightly with regards to Melphalan side-effects, I actually had no mouth or throat sores, no sickness & came out of hospital the same weight that I went in!
I was told I probably came through the SCT relatively well because I was quite fit & active & used to a good balanced diet, though I have always been a great advocate of ‘a little of everything & no excess’.
I have been Zometa free for approx. 3 mths. while having the SCT & was re-started on it again 2 wks. ago, 36 hrs. after the the infusion I experienced side-effects with the worse being depressed breathing(not requiring treatment but noticeable), arrhythmia & the usual aches & pains in bones, joints, calves, feet & an increase to some side-effects after activity, especially 2×1 mile walks I took over the 1st wk. post Zometa.
Sound familiar to anyone? This past wk. I have been weighing up the pro’s & con’s of continuing or not with Zometa & I am finding it quite difficult.
Apart from the side-effects I have mentioned & ONJ there is also an increased risk of kidney damage(apparently a reason why some Dr.s stop or reduce Zometa after 2 yrs.), oesophageal cancer & as said on this forum hardening of the bone.
On the plus side we have, ?anti Myeloma properties(longer remission period), strengthens bones slows further bone damage & helps with bone repair.
I see my Consultant in 2 wks. time & as you may have guessed I will be discussing this with her, has anyone already had this conversation with their Consultant & if so what was said?
If not, then I would be interested to hear what others feel with regards to Zometa.
Thanks,
Ian.
