Our journey began around May 2015. My husband, John, was urinating frequently so I sent him to the doctor. I thought he had diabetes. Wish it was! Blood tests etc. were ordered and a few weeks went by before we made it to see the doctor. He said "stage 3 renal failure". We nearly fell of our chairs in surprise.
An appointment was made with a kidney specialist for late August. In the meantime, blood tests were done every 2 weeks or so. I asked to be given the results each time. I was quite alarmed to see creatinine levels rising quite rapidly. Eventually, I rang the specialist and asked could we see him sooner. The next day, the specialist ordered a different blood test. The following day, the specialist rang to say come and see him immediately.
My husband was admitted to hospital with all and sundry tests being ordered. He felt well then. Next thing, a haematologist appears on the scene and says myeloma. He has light chain myeloma - kappa. At that point levels were around 8000 whatever units that may be, but normal was less than 100. His kidneys have been badly affected but that was all at that point in time.
So here we are 9 months down the track. Velcade, cyclophosphamide and dex were drugs I had never known of. And the list is growing. Thalidomide was used for a while but the side effects were too terrible. He was allergic to Bactrim but after a recent stint in hospital with pneumonia, we have other antibiotics.
I cannot speak highly enough of the medical people and facilities here in Lismore, Australia. We have been overwhelmed with the level of care and expertise. Even though it is a rural town, we feel confident that the treatment and care given is top quality. We are humbled by the number of people who are involved in so many levels in my husband's care and wellbeing. There are many people involved that we do not even know at a consulting level or otherwise.
My only grievance I have is that no one seems very interested in talking about or encouraging movement/exercise/motivation. Given the drugs John is on, the disease, low blood counts etc, it is not surprising that he feels unwell and does not want to move. I can understand that. However, when sitting around and sleeping with very little activity or going outside, is the vast majority of his days for weeks and now months, then this is not good.
I have tried all and sundry ways to try to help him to keep moving. Diplomacy, tact, logic, facts, nagging doesn't help. When I bring the topic up to medical people, my concerns are meet almost with a glazed look. We can talk drugs and side effects til the cows some home. We can have token discussions about nutrition. God forbid that we should want to try alternative therapies.
So when John ended up with pneumonia and now a bone lesion in C2, I feel like saying "I told you so". I have enlisted a physiotherapist now to help him. The best strategy is to take John to any markets around as I have found he likes that. It means interesting foods.
We watched a very well presented and thorough series on alternative treatment for cancer. However, it created a great dissonance for me. I am a strong believer in healthy lifestyle, eating well etc. and in the use of herbs. I steer clear of multivitamins and such. The medical team have warned us of using anything alternate without checking with them.
It seems the alternate team tells you chemo gives you cancer and the medical team tells you alternate treatment may compromise your chemo. Chemo comes with a long history of research and expertise based on scientific reviews and trials involving lots of money. John's cancer is a rarer type and very aggressive. I saw what was happening to his blood results right from the onset. We can't risk an alternate methodology- tho I do feed him fresh turmeric, which has been approved.
John's quality of life is not really great. He gets "chemo brain" and as a very intelligent man, this is very debilitating for him. It is no wonder he is depressed and does not want to move even tho moving and getting outside would help him feel better in so many ways. I can see that the future is going to be challenging, and my current strategy is to try to look after me as best I can cause I am going to be needed more and more.
Thanks for "listening" and allowing me to purge a little.
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Dideoh - Name: Dianne
- Who do you know with myeloma?: my spouse
- When were you/they diagnosed?: july 2015
- Age at diagnosis: 63
Re: New member - spouse of myeloma person
Dideoh,
I am not a physician or nurse; however, I can unequivocally tell you that some type of exercise is crucial to your husband's physical and emotional well being. I'm concerned that your health care team isn't insisting upon it. Also, if you are concerned about depression, ask for a psychiatric consult. Seeing an oncology therapist every few weeks has been a Godsend for me.
Best wishes
I am not a physician or nurse; however, I can unequivocally tell you that some type of exercise is crucial to your husband's physical and emotional well being. I'm concerned that your health care team isn't insisting upon it. Also, if you are concerned about depression, ask for a psychiatric consult. Seeing an oncology therapist every few weeks has been a Godsend for me.
Best wishes
Re: New member - spouse of myeloma person
Welcome to the forum, but I'm sorry you have need of it.
It is quite understandable that your husband doesn't want to move. Between depression and chemo side effects, I'm sure it's common. I've found that signing up with a personal trainer helps me get and stay motivated. I'm accountable to someone, and I've learned that I feel better when I'm more active.
Also, would he consider a counselor or therapist? Getting a diagnosis like myeloma is heavy duty. I found it quite difficult to cope emotionally without a therapist (and anti-depressants).
It is quite understandable that your husband doesn't want to move. Between depression and chemo side effects, I'm sure it's common. I've found that signing up with a personal trainer helps me get and stay motivated. I'm accountable to someone, and I've learned that I feel better when I'm more active.
Also, would he consider a counselor or therapist? Getting a diagnosis like myeloma is heavy duty. I found it quite difficult to cope emotionally without a therapist (and anti-depressants).
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: New member - spouse of myeloma person
Dideoh,
Welcome to this wonderful community, and thank you for sharing your husband's (and your) journey so far. I think you will find this a useful source of information and support. I am a relative newcomer myself and have found it invaluable.
It sounds like you are getting excellent care overall, but no health care team hits every single note every time. If it is unlike your husband to be so physically inactive and apathetic about it, perhaps he might be depressed. I have suffered from depression myself (years ago, well before my myeloma diagnosis, and doing well with it now). It is often accompanied by an overwhelming inertia that makes it difficult to do much of anything, or at least to WANT to do much of anything. It's worth asking to have a psychiatrist evaluate him. He may or may not need medication for depression, but it is well known that physical activity helps fight depression and perhaps he will be more willing if it's "doctor's orders." He is lucky to have someone in his life (you) to push him on this. Often family and friends don't want to bother the patient or challenge them. We need it sometimes.
Please keep us posted on his progress.
Cathy
Welcome to this wonderful community, and thank you for sharing your husband's (and your) journey so far. I think you will find this a useful source of information and support. I am a relative newcomer myself and have found it invaluable.
It sounds like you are getting excellent care overall, but no health care team hits every single note every time. If it is unlike your husband to be so physically inactive and apathetic about it, perhaps he might be depressed. I have suffered from depression myself (years ago, well before my myeloma diagnosis, and doing well with it now). It is often accompanied by an overwhelming inertia that makes it difficult to do much of anything, or at least to WANT to do much of anything. It's worth asking to have a psychiatrist evaluate him. He may or may not need medication for depression, but it is well known that physical activity helps fight depression and perhaps he will be more willing if it's "doctor's orders." He is lucky to have someone in his life (you) to push him on this. Often family and friends don't want to bother the patient or challenge them. We need it sometimes.
Please keep us posted on his progress.
Cathy
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CathyAnn - Name: CathyAnnCleveland
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 1/22/2016
- Age at diagnosis: 56
Re: New member - spouse of myeloma person
Hi from Brisbane,
The Australian Cancer Council recommends getting outdoors in 'nature' on a regular basis as hard evidence shows mental, physical, and emotional wellbeing is improved when doing so. They also have a great phone helpline regardless of where in Oz you live and run 'Mindfulness' courses which are for carers and patients (so often the carer is overlooked) I have found them very supportive with phone counselling too.
Walking my dog has been a Godsend to me in my myeloma journey, and I always feel better after getting out into the big outdoors.
My G.P., with my specialist's agreement, has provided me with anti anxiety/depression medication that I pop under my tongue and take when needed. Having that as a back up has helped me too, although I do try to get through without it.
I found not being able to plan too far ahead was adding to my depression so now make sure that I plan little treats even if it is just an overnight trip or going to the movies and so on. It is feeling without hope that is the biggest problem, but I try to balance this by reminding myself of all the emerging new drugs. Sometimes it works, sometimes not. Ho hum! Being human is hard work.
I wish you and your husband all the very best,
Shirley
The Australian Cancer Council recommends getting outdoors in 'nature' on a regular basis as hard evidence shows mental, physical, and emotional wellbeing is improved when doing so. They also have a great phone helpline regardless of where in Oz you live and run 'Mindfulness' courses which are for carers and patients (so often the carer is overlooked) I have found them very supportive with phone counselling too.
Walking my dog has been a Godsend to me in my myeloma journey, and I always feel better after getting out into the big outdoors.
My G.P., with my specialist's agreement, has provided me with anti anxiety/depression medication that I pop under my tongue and take when needed. Having that as a back up has helped me too, although I do try to get through without it.
I found not being able to plan too far ahead was adding to my depression so now make sure that I plan little treats even if it is just an overnight trip or going to the movies and so on. It is feeling without hope that is the biggest problem, but I try to balance this by reminding myself of all the emerging new drugs. Sometimes it works, sometimes not. Ho hum! Being human is hard work.
I wish you and your husband all the very best,
Shirley
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sunnybrisbane - Name: Shirley R-M
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 70
Re: New member - spouse of myeloma person
I am 2 weeks from having my stem cell transplant in the Greenslopes Hospital in Brisbane, Queensland, Australia. I have always been fit enjoying training at the gym, swimming, walking, and cycling.
I was diagnosed in September 2015 and have completed 12 cyles of chemo and recently went through the harvesting of my new stem cells.
Throughout this time, I have continued with the gym 3-4 times a week. I must admit the 17 steps up to the gym seemed like 27 steps some days. I found the encouragement I received from fellow gym members is therapeutical and their support is so appreciated. A pat on the back, head, or bottom is all I need. I am a keen swimmer and find the endorphins really kick in afterwards.
I have had 10 fractured ribs during this time, and my beautiful husband went into a lingerie shop and told the sales girl he needed a corset. He was told they didn't cater for men! He convinced them he needed it for his wife who had fractured ribs. He came home with a "little black number" with ribs and laces. It held my painful ribs together so I could breathe more easily and it really helped with the pain. My oncologist was so impressed and took him aside and asked if he had bought it in an adult shop.
I still went to the gym and found I could sit on the exercise bike (level 2) and pedal. I also did leg stretching exercises on a mat. I always had someone offering to help me up.
Because of the ribs, I had to have a break of 6 weeks from the pool, but I am now wearing a tight elasticized brace for my ribs and am quite content to kick up and down the pool on my tummy and back. I also wear a foam harness around my waist, which also supports my ribs and makes me buoyant.
I am not back on the bike as I am too nervous I might fall off and fracture more ribs (not many more left).
I believe I have pushed myself when I was fatigued from the drugs. My oncologist also encouraged me to continue my exercise if possible. I have been told I am only at "base camp" and still have Everest ahead of me. I am believing I will be like an eagle, soaring and gliding in the thermal currents not clambering up the sides.
I really do encourage any exercise if possible. My husband is my own personal trainer. I love him.
Faye known as FAYMOS
I was diagnosed in September 2015 and have completed 12 cyles of chemo and recently went through the harvesting of my new stem cells.
Throughout this time, I have continued with the gym 3-4 times a week. I must admit the 17 steps up to the gym seemed like 27 steps some days. I found the encouragement I received from fellow gym members is therapeutical and their support is so appreciated. A pat on the back, head, or bottom is all I need. I am a keen swimmer and find the endorphins really kick in afterwards.
I have had 10 fractured ribs during this time, and my beautiful husband went into a lingerie shop and told the sales girl he needed a corset. He was told they didn't cater for men! He convinced them he needed it for his wife who had fractured ribs. He came home with a "little black number" with ribs and laces. It held my painful ribs together so I could breathe more easily and it really helped with the pain. My oncologist was so impressed and took him aside and asked if he had bought it in an adult shop.
I still went to the gym and found I could sit on the exercise bike (level 2) and pedal. I also did leg stretching exercises on a mat. I always had someone offering to help me up.
Because of the ribs, I had to have a break of 6 weeks from the pool, but I am now wearing a tight elasticized brace for my ribs and am quite content to kick up and down the pool on my tummy and back. I also wear a foam harness around my waist, which also supports my ribs and makes me buoyant.
I am not back on the bike as I am too nervous I might fall off and fracture more ribs (not many more left).
I believe I have pushed myself when I was fatigued from the drugs. My oncologist also encouraged me to continue my exercise if possible. I have been told I am only at "base camp" and still have Everest ahead of me. I am believing I will be like an eagle, soaring and gliding in the thermal currents not clambering up the sides.
I really do encourage any exercise if possible. My husband is my own personal trainer. I love him.
Faye known as FAYMOS
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faymos
Re: New member - spouse of myeloma person
Thanks folks for your responses. It is nice to share one's story and know that it is being heard. I am a firm believer in talking out one's challenges in life. The process of doing so is often enough in itself.
We are very fortunate to have so many skilled people at hand and great facilities. I know that John's depression is a result of the drugs and disease. Fortunately, we live in a small rural village and just around the corner from us is a very well respected exercise physiotherapist. I applied for the extended care program through our GP, which provides 5 free visits a year to a physio. The physio has found a lateral way to extend that to 15 visits by using a gym he has set up in our local hall. It also helps get John out and meeting people. So now I have applied for the same program so that I can take care of me a bit better.
I have discussed antidepressants with John but he is firmly against them. Even though I have had many attempts at discussing with him the benefits of exercise for all and sundry especially mentally, he just can't seem to keep it going for long. Hence having someone else to support and encourage him may help.
We went out to today to "Eat the Street". There are so many different markets around this area. The strategy of going to markets and finding interesting foods including woodfired sourdough bread has been very successful. Tomorrow is the monthly craft market just down the road from us.
We are very fortunate to have so many skilled people at hand and great facilities. I know that John's depression is a result of the drugs and disease. Fortunately, we live in a small rural village and just around the corner from us is a very well respected exercise physiotherapist. I applied for the extended care program through our GP, which provides 5 free visits a year to a physio. The physio has found a lateral way to extend that to 15 visits by using a gym he has set up in our local hall. It also helps get John out and meeting people. So now I have applied for the same program so that I can take care of me a bit better.
I have discussed antidepressants with John but he is firmly against them. Even though I have had many attempts at discussing with him the benefits of exercise for all and sundry especially mentally, he just can't seem to keep it going for long. Hence having someone else to support and encourage him may help.
We went out to today to "Eat the Street". There are so many different markets around this area. The strategy of going to markets and finding interesting foods including woodfired sourdough bread has been very successful. Tomorrow is the monthly craft market just down the road from us.
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Dideoh - Name: Dianne
- Who do you know with myeloma?: my spouse
- When were you/they diagnosed?: july 2015
- Age at diagnosis: 63
Re: New member - spouse of myeloma person
I have been reading through various posts and found it interesting to read all the information. My husband's journey began in July 2015. At that point his kappa levels were 7800 (normal range 6.7-22.4). The kappa / lambda ratio 330 (normal 0.31-1.56). Creatinine was around 300 (normal 60-110).
Latest results has kappa down to 2240, ratio 90, creatinine 150.
He has had weekly Velcade, cyclophosphamide, and varying amounts of dexamethasone since July. (Thalidomide was trialed for a few weeks but had bad side effects.)
Other meds include valacyclovir daily and Caltrate recently added after he developed a C2 bone lesion (which was radiated). Also Zometa infusions monthly, epo injections monthly (haemoglobin 88).
He was on Bactrim but developed a rash, so it was stopped. After a recent bout of pneumonia and over 2 weeks in hospital, he was back on antibiotics of all sorts. Now we are trialing Bactrim again twice a week.
There has been a significant improvement in his blood results but when I look at what normal levels are, I wonder at how he really is. Our goal is to get to stem cell transplant. we were due to start the harvest process in February but ended up with pneumonia. But that was when the lesion was discovered, so it was just as well we had not started that process.
I wonder about quality of life issues. He has just started to have a bit more energy and less chemo brain. However, for months and months, he slept and sat. The physiotherapist has been helping a bit. My strategy to take him to markets works well. I try hard not to say anything now about going for a walk or doing the exercises he has been given. However, with this recent bone lesion, I feel so concerned. Only occasionally does he do anything. A bit of sunshine would be good for him. The possibility of further lesions / fractures is a possible outcome despite the drugs, so I know that exercise and some sunshine is highly desirable.
Latest results has kappa down to 2240, ratio 90, creatinine 150.
He has had weekly Velcade, cyclophosphamide, and varying amounts of dexamethasone since July. (Thalidomide was trialed for a few weeks but had bad side effects.)
Other meds include valacyclovir daily and Caltrate recently added after he developed a C2 bone lesion (which was radiated). Also Zometa infusions monthly, epo injections monthly (haemoglobin 88).
He was on Bactrim but developed a rash, so it was stopped. After a recent bout of pneumonia and over 2 weeks in hospital, he was back on antibiotics of all sorts. Now we are trialing Bactrim again twice a week.
There has been a significant improvement in his blood results but when I look at what normal levels are, I wonder at how he really is. Our goal is to get to stem cell transplant. we were due to start the harvest process in February but ended up with pneumonia. But that was when the lesion was discovered, so it was just as well we had not started that process.
I wonder about quality of life issues. He has just started to have a bit more energy and less chemo brain. However, for months and months, he slept and sat. The physiotherapist has been helping a bit. My strategy to take him to markets works well. I try hard not to say anything now about going for a walk or doing the exercises he has been given. However, with this recent bone lesion, I feel so concerned. Only occasionally does he do anything. A bit of sunshine would be good for him. The possibility of further lesions / fractures is a possible outcome despite the drugs, so I know that exercise and some sunshine is highly desirable.
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Dideoh - Name: Dianne
- Who do you know with myeloma?: my spouse
- When were you/they diagnosed?: july 2015
- Age at diagnosis: 63
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