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Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
Good evening everyone. So today our GP informed us that hubby's testosterone levels have dropped to a silly number and he has referred us to an endocrinologist. Now I just want to know if anyone has heard of this happening before. We didn't ever have this mentioned to us so are feeling a bit confused - again. We aren’t sure if this is a Side effect of the chemo. Any advice? We see the haematologist a week on Monday and I have reported this to the team today by email ready for the next appointment. Thank you. June.
Dear will6, I have found this article for you from the myeloma beacon which you might find helpful. How is your husband coping with his treatment overall, I hope you are taking good care of yourself as I know how stressful things will be for you at the moment.
Oh thank you for that. For hubby’s first foray into the wonderful world of chemo he did really well but developed peripheral neuropathy so this time round - after a wonderful six months of remission - a different chemo is being used. He has been ill literally from 15 hours after the first dose and continues to be quite poorly. He has lost so much weight, his appetite, his sparkle and his joy of life. He is a different person overall. This time round we are losing heart but then the sun shines or the dog stretches and we start again. With my disability I am feeling a bit overwhelmed and struggling to be a one woman glee committee but again I walk the dog or watch tv till I feel a bit brighter. The three of us are clinging to each other and long may that continue. Thank you for caring.
Dear will, I am sorry to hear your husband is struggling at the moment, what is the new chemotherapy regime he is on ? I see from your previous posts that this is a second line treatment after a relapse which must be very disappointing for you both. Myeloma is such a individual disease and patients reactions to therapy vary enormously, if your husband is having bad side effects don’t hesitate to talk to your hemotologist as things can sometimes be tweaked, especially the steroids. It’s good to hear you are receiving some comfort from your dog, they motivate you to go out even when you don’t feel like it, which is a good thing. Don’t loose hope, if this therapy isn’t right there are others that can be tried. I personally did a line of treatment that didn’t work at all but the next one had the desired effect, it’s not an exact science due to the uniqueness of each patient. Don’t feel bad about feeling down, it’s totally understandable, having myeloma would be a test of endurance for anyone, patient or carer alike.
The recurrence of myeloma caught us totally off guard as we had no idea anything was wrong. Hubby was doing so well, heathy and getting back to a version of his old self. We had even been away to the east coast for a weeks break. When our team said it was back and indeed worse than at first we thought it was some kind of weird joke. We had no questions prepared and just sat like a pair of idiots saying “OK”over and over. Hubby even swore which is unusual and then he apologised. The whole team seemed stunned it was back. The next week he bregan taking Revlimid, dexamethasone and had to carry on with the monthly Zometa. Within 15 hours of the first dose he was sweating so profusely that he looked as if he was leaking. Each day he has used a minimum of 22 T-shirt’s, three changes of bedding, numerous towels etc etc. He has been hospitalised twice to investigate and each time nothing was found. His temperature has stayed constant at 36.4 throughout. He is due to complete his second cycle on Monday then a week off till we see the specialist again. Our GP did the testosterone test and also has reduced his morphine tablets to try and help the sweating. We haven’t slept more than three hour stretches since this began, he doesn’t want to eat, he cries, he worries and all this is so unlike him. We are both exhausted. Thank you so much for caring and I hope you keep going along really, really well.
Dear will, I am taking a low dose of 5 mg revlimid and 10 dex tablets once a week and do not experience the sweating you describe, however the dex causes insomnia and swings in mood, ranging from hyperactivity to episodes of crying or irritability. How much dexamethasone is your husband taking if you don’t mind me asking. One of the main problems of having myeloma is the lack of certainty that accompanies it, we all want to know how things are going to pan out but this is not possible with myeloma and part of coping is coming to terms with this fact. The most important thing now is to get the balance right between the therapy and your beloved husband’s quality of life so I would explore with the doctor whether the dosage can be altered to see if some of these symptoms can be reduced. These things are not set in stone so don’t be afraid to raise the subject. I sympathise with you both very much and am here to help if I can.
Hubby is taking 25mg Revlimid daily and 10 mg of dexamethasone once a week. We are definitely going to raise some questions next week as this situation is becoming intolerable. We did so well last time and were sure we’d do the same this time but I think getting caught by surprise has put us in the back foot. He had a huge coughing fit a couple of nights ago and has hurt his ribs poor thing. we did try to take back a bit of control today by getting him packed up warmly in the car and having a ride out to order some new didn’t furniture. We’ve been talking about it and I’ve been talking us out of it for ages but today we bit the bullet and ordered it. I also booked a handyman to come in a couple of weeks to start on the endless list of jobs that need doing. Positive moves. Hopefully theses things will help to brighten our mood.
I send good wishes to you and yours and trust this finds you doing well. Thank you for your support.
Sorry 20mg dexamethasone.
Dear will, I think the right approach is to raise the subject of dosage with your doctor given that the side effects are so severe. Revlimid comes in several different dosages with 25mg being the maximum. I’m glad you managed to get out today it’s good for morale. It’s important to take into account that haematologists are not the worlds greatest communicators so you must compensate by being quite proactive in getting questions answered. Let me know how you get on next week. As for me, I am stable and as well as can be expected. My focus is always my quality of life.
Just a quick update following hubbys Zometa infusion today. The nurse was very surprised at the state hubby was in when we arrived at clinic and immediately found the haematologist. He OK’d the Zometa to go ahead and ordered xrays of the rib area, further blood tests and also added us to the end of clinic. Hubby had a full exam, we were asked lots of questions and it was decided that as the first two rounds of Revlimid seems to be working as the paraproteins are going down they will stop both the Revlimid and Dexamethasone for two weeks as all the issues appear to have started with the introduction of the above. He will be reviewed in two weeks and if the issues have stopped or slowed then it can be attributed to the meds and they will be changed. If not then further investigations will be taken and the chemo started again.
At least it’s feels as if someone is listening at last. Here’s to a few non sweaty nights.
Dear will ( June) this is excellent news and demonstrates why we as the patients and carers need to be very proactive when the side effects are unmanageable, I am impressed that your husbands doctor reacted so quickly and hopefully moving forward you will feel confident to raise any issues you are concerned about. The one thing I know about myeloma is you have to expect the unexpected ! I hope my musings have been of some use to you, please let me know how things progress and let’s hope the sweating stops soon.
DearWill6 just checking in to see if there has been any improvement in your husband’s symptoms since he temporarily stopped taking his revlimid.
Oh thank you for asking Jane. The sweating has definitely eased but not stopped. He is terribly tired and the broken ribs haven’t helped his pain levels but we are plodding on. We saw the endocrinologist on Wednesday night after going private simply to speed things up. He was really good and is referring hubby for an MRI scan on the pituitary gland plus lots more tests to rule out any issues other than the testosterone issue. That will be treated with testosterone cream. He has already been in touch with hubby’s haematologist so they will work together to help. We have both felt a bit burdened this week but I guess it’s a lot to take in and with Christmas approaching feeling are heightened aren’t they? We see the haematologist on Monday and hubby is pinning all his hope on some good news and he hopes for a weight gain. Again thank you for asking - kindness means so much. I hope this finds you well and looking forward to Christmas.
DearWill6 I am glad to hear the sweating has abated somewhat. I think it’s good you have sort a second opinion. It’s not impossible that some of these symptoms are being caused by something as yet undiscovered and not related to the multiple myeloma treatment, a mri scan is the gold standard in diagnostics so that will hopefully give you some answers. I’ve never broken a rib but imagine it is very uncomfortable and I hope your husband has adequate pain relief. I took OxyContin when I experienced sternum and back pain in the past. I am stable at the moment and am all set for Christmas, hubby is going to cook Christmas dinner for the first time in 36 years of marriage, so wish me luck.Please update me when you know anything new.
DearWill6 just checking in to see how things went at the hemotology clinic on Monday. I hope you got some answers as to why your husband is getting all these distressing symptoms.
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