Multiple Myeloma Support Group

Hi Caligal-- What you are experiencing is a pretty normal side effect of MM. My 'sweating' consists of real droplets of rain falling from my head -- I often look like I've just stepped out of a shower!! This sweating is a real nuisance, but in talking with many other MM patients I found that this sweating happens to most, but particularly those who are using Fentanyl patches for pain management. Are you using these patches?? I find that carrying a dry wash cloth in my purse helps to 'mop up' my rain!! Best wishes with this disease...fortunately there are many new drugs and treatments now happening to make this less of a 'terminal' illness. Cheers, Cath

Hi Cath,
Thanks for the info. I thought the sweating was probably from the MGUS. My case is kind of unusual as I have had the angioedema attacks. This is what sent me to the Mayo Clinic in March. It is sorare to have the angioedema from this that the MDs at Mayo only had seen a couple other cases. Angioedema is a disease that causes severe swelling in various parts of my body. It was causing swelling in my bowel which sent me to the ER many times. I was hospitalized, tested, scaned, had surgery and finally got a diagnosis in March. Anyway my doc here says I don't have MM yet but since my marrow shows gene changes he wants to check me every 3 months. I don't use Fentenyl, just hydrocodone. Thanks so much for your help. I'll stick a washcloth in my purse when I go out to mop up also. It;s embarassing to check out at the store and be dripping all over. Hugs, Carol

Hi Carol~~ I was just wondering what your second round of blood tests - three months after the first--have shown?? Has the diagnosis of MGUS changed in any way? How are the 'sweats' going? Have you found any difference in the rate of sweating between winter and summer? I have noticed that I don't perspire quite as often in the winter time -- infact it has been over a month since my last 'personal head shower' -- how are you going?? Best wishes, Cath

Cath,
I just read your last response. My lab tests have been good. No changes. My sweats seem some worse in the summer which is now here. The odd thing that occurs is they happen when I'm at all active, such as pushing a grocery cart slowly through the store. When I ask my oncologist about this he just doesn't respond. Anyway it's a small problem compared to all you've gone through. I'll continue to keep in touch. Hugs, Carol

Hi Carol~~I was rereading your message and realised that I never actually asked you what the symptoms were for the angioedema of the bowel were? I ended up with two bowel perforations after using dexamethasone, but I wonder....! From all that I am reading these days, it seems that many more people are being diagnosed with MGUS - not because it is happening more often, but because doctors are actually asking for the right blood tests and being able to recognise what they are now finding. Most of us had MGUS for many, many years before being diagnosed with MM - but the difference is that we never knew it because doctors then didn't know what they were seeing!!! Fortunately MGUS is not an emergency situation and provided you keep tabs with blood tests every three months, you will recognise when you will need to seek treatment. Even when you have the 'right' markers in your blood work, it still won't be an emergency situation and you will have plenty of time to decide just which line of treatment you want to do. The beauty of having MGUS is that you now know what you should be studying so that you have all the latest information at your finger tips when you need it. So don't panic -- it may literally be years before you need to decide what you want to do to fight this disease. Take the time to study and make the right choices for yourself. Find a doctor who specialises in myeloma and if your normal doctor doesn't, then asked to be referred to someone who does. This doesn't mean that you have to give up your good old doctor, it just means that you work with two doctors to get the best treatments possible. My oncologist works together with the senior oncologist at the biggest hospital in the State and together they can provide me with the latest and greatest in treatment options. Because MM is a l o n g journey, you must have an excellent relationship with your doctor for you will be seeing him/her once a month for the rest of your life -- be it a year or ten years!! Most people never get to know their doctors that well, but we are lucky!! Not only our oncologists, but also the nursing staff who do all the chemotherapy, the radiotherapy staff, and all of the ancillary hospital staff that you get to know over the time you are having IV treatments. Fortunately the people who chose to work in this field are some of the most fantastic people in the world and we are lucky to know and work with them. There are some GOOD things about having MM, funny as that may sound. Best wishes, Cath