Hi Tom, To fit in with 'Onwards and upwards' we're rolling along on the plateau of good remission just 12 months post SCT at the moment with a few bumps from the usual crushed vertebrae and other related problems and hoping the next review is neutral. Pauline is still a good bit below what she was just 4 months ago but picking up again after a couple of chest/nasal infections. How are you now?
I try to keep track of how everyone else is doing but this new site seems to generate so much activity it is difficult to have a quick scan to pick up on everyone's ups and downs. Having thought about it, my suggestion is to use the profile to list and update one line progress and status info. This can be thinned and updated with recent info and quickly accessed when anyone starts a new topic. I find it difficult to respond in some cases having lost track of someone's progress or problems. Best wishes, Ron.
Hi Tom, Don't feel too bad. If you feel left out, I'll send you a copy of mine.8-)
Thanks Bridget and Elizabeth, I reckon I (We) just need the will power to make a decision, Which brings us nicely back on topic.:-D
Thanks Bridget, Pauline is getting there I think. It has been nearly a month now but she's just left with an irritating dry cough now and beginning to talk holidays….Aaaagghh. Every time I book something it goes wrong and she won't make a decision. Guess who gets the blame. 🙂
Hi Ron, I hope that Christine soon gets the treatment balanced. The early days always seem to be the most difficult. We just focused on getting to know as much as possible about treatment and possible outcomes and making sure that we followed the treatment regime as closely as possible. I have followed a lot of stories on this site and found most of them to be encouraging. It used to be a lot easier on the old site because there was only one section but I tend to stick to General now. You will probably find that the next few weeks will be the worst because as thing progress you will get to the stage where you understand what is happening an why. Sadly, there only seems to be general rules and no-one can be certain how things will progress but we have found that the Myeloma teams are all dedicated to producing the best possible outcome. It's just a case of getting to know the enemy and using everything available to fight it. Please keep posting. the next few weeks are the most important and I hope you soon get to the point where you feel a bit more in control. Ron.
P.S. We are both pretty useless at golf but we do it together.
Hi all, I am not at all sure about this. I was puzzled at first because my e-mail handler displayed all of the header information but everything that is there points back to this forum apart from the references to opaltelecom.net and smithmicrosystems.com neither of which seem to exist. Andy, if you are there, help please.
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Hi Jean, I nearly answered it. It may still be genuine. As far as I know, the worst that can happen is that whoever sent it now knows you are active at that e-mail address and you may get other apparently unrelated nasties so just be careful and don't open anything from an unknown source. I don't think you should lose sleep. In 10 years of internet use, most without any protection, I have only picked up one piece of adware and that was when I got some free antivirus. In the succeding 3 years The antivirus has not picked up a single item of possible harm.
Hi Bridget, I don't think that you should worry too much. Your will power seems to have joined forces with your sense of humour and together they are a formidable force. I am sure that together they will pull you through anything that the dreaded M can throw up.
It is certainly a great help to the rest of us. Ron.
Hello Dai, I got one too. It certainly seemed to be an odd format and I think you are right to bring it to our attention. Certainly, there are some sad people out there and I should be very surprised if this site did not get their attention. I have always worried about this problem because of the very easy going nature of everyone here. Perhaps someone from H.O. could make a comment please? Ron.
Hi Ron, First, hello and welcome. I guess you are beginning to get the feel of this little community now. Like you, it is my wife Pauline who was diagnosed,out of the blue, nearly 2 years ago just before her 65th birthday. Nothing that you have experienced so far is in any way unusual. Pauline had all of that and more, but she was very unlucky and had a severe toxic reaction to one of the drugs. It was a worrying 3 months but everything got sorted and, until she got a nasty cough and cold a month ago, she was playing golf again on a regular basis and still beating me. You will find that, no matter what happens, someone here has already been there but no two have had the same combination of problems. That just seems to be the way it is. One important point which no one seems to have mentioned yet – don't go surfing the net for information. Most of what you find is out of date and worrying. Everything you need is right here until you have learned enough to make sense of things. You will probably get a lot of useful information if you say where you are being treated and, if you get a chance, try and get to one of the Myeloma info days. It will probably take a few months for all of the treatment regimes to be fine tuned to your wife's needs so keep the feedback coming and hopefully, in a while, you may be in a position to offer help and encouragement. Again, welcome to the club which no-one wants to join.
Another Ron.
Time to start mothering….
Hope it's not too bad.
Ron.
Hi Eva, Agreed on all points. I offered the bits and pieces as discussion points. As I said, we have always trusted aspirin and were aware of its problems with warfarin and clexaine etc. but wondered if there were any problems with using while having nothing more than the bone strengthening drugs. It is encouraging to find that aspirin is being recognised as useful in a wide range of ailments, even as an effective treatment for Migraine. Certainly, I have always found that 3 aspirin and an early night fixes most things whereas paracetamol concoctions merely prolong the suffering. Perhaps it's a lot to do with having faith. 🙂
Ron.
Hi David, Good news. That has got to be a sign that normality, whatever that is, is returning. We heard that it can come back in a different form but were surprised when Pauline's came back with less grey and nicely wavy. She has had a full head of hair for six months now and only been the the hairdresser once for a cut. She thinks it's great to be able to just wash it in the shower and give it a quick comb through and it's all done. Who knows? You may have to download a new picture in a few weeks. 🙂 Ron.
Hi Bridget, I dropped onto a report somewhere recently that If Revlimid is supplemented with about 100mg Aspirin daily it can add as much as 25 – 50% to the benefit timespan. I just can't remember where! More to the point of Amelie's topic, I also found a report on the results of a test which showed that paracetamol can impede the body's response to infection by lowering temperature while the normal response is to increase temperature as an effective way of fighting infection. Personally, I have no faith at all in paracetamol and always go for aspirin. Unfortunately, Pauline was told to avoid aspirin when she was diagnosed with Myeloma but we don't know why. Do you or anyone else have any thoughts on this?
Ron.
Hi Bridget,
We asked about the pneumonia jab after Pauline's SCT and were surprised to be told that it could be dangerous to have it for a second time. Pauline had it about 3 months before her SCT and they were concerned that it may be partially still effective, even after the transplant. Nothing is straightforward with this damned disease is it?.
I am sorry that to read that you've been having a tough time over Christmas and I tried to back track to pick up the full story but I find that much more of a problem on this new site. I have to confess to preferring the old one. Also, I've had my hands a bit full with Pauline who seems to be on the road to recovery at last. Nevertheless, I hope that you are still improving after your antibiotics and that the other treatments start to produce better results. Best wishes, Ron.
