Hi everyone ... and thank you for accepting me into the group.
My husband was diagnosed not that long ago, and decided not to take on chemotherapy at this stage – much to the disgust of the doctor, who totally wiped him from all care and would not offer any further assistance.
The most difficult part of it for him at the moment is the pain, and having gone from a very active sportsman and surf lifesaver, devoted to helping those less fortunate, to a man who can barely get from the bedroom to the kitchen, even with the aid of a walking stick. I am so worried about him being lonely, stuck in a bed on the bad days with only his thoughts and worries, and a random pup, for company. Fortunately I work just 5 minutes drive away and can get home most lunchtimes, but I know that isn't enough.
We are taking a regimen of natural products and this seems to be keeping the white blood cell count stable, but it certainly hasn't been the cure so far (not that we are giving up). Not having chemo is his choice, and it is his life, so I support it.
On a personal point, and I'm sure it's selfish, so I apologise, I really struggle keeping cheerful so I can keep his spirits up, working full time plus a part time job from home to cover the extra expenses being incurred, managing our property and keeping firewood cut, ensuring the gardens are producing quality organic food for him, getting things he really wants, like fencing and chickens. (Chickens! Where on earth am I going to find the time to care for chickens too?! I wonder if I can teach them to use a chainsaw and cut wood?) Also, managing the house and the bills and all the things I used to have help with.
I feel like I let him down every day because there is always more to do at the end of the day than what I have done. (I am sure if I don't clean the fridge soon the lettuce will turn into a new life form and demand to be set free!)
I would love to know, from a multiple myeloma point of view, what things you really need and what is really important to you so I don't miss anything – any hints for pain relief, how I can get him some online company, and what I need to do to ensure that in the future I have in place everything he needs.
And if any family members of multiple myeloma can advise on how to do it all AND resist the urge to sit in the corner with a bottle of good whiskey occasionally rather than face a laundry pile high enough to warrant an Everest style expedition, that would be great too!
Forums
-
Suzanne_NSW - Name: Suzanne
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 56
Re: Husband diagnosed 5 months ago; how to stay cheerful?
G'day Suzanne,
Firstly welcome.
You may find my reply a little insensitive. So allow me to apologize in advance.
If your husband does not get treatment very soon, he will only get worse and quickly die. Alternative treatments do little or nothing to prevent or slow multiple myeloma. I urge him to get treatment ASAP. If, on the other hand, he is content to just let life go, then rightly so, it is his choice.
If I may assume, he is possibly beaten down by his symptoms just now. I can assure you that treatment will lift him somewhat if he gives it a go. I know it did for me. When I started treatment, I actually felt the best I had in quite sometime. Probably because, without treatment, my bloods were lacking in so much. Yes, chemo can make you ill and all that. But what's the alternative?
As for yourself, do you have any friends who could help with the firewood? Do you have a local Masons or men shed? If you ask them for help, generally speaking, they will not turn a genuine case of need away. They may even provide some company for hubby. Give you some time out.
Vicki
Firstly welcome.
You may find my reply a little insensitive. So allow me to apologize in advance.
If your husband does not get treatment very soon, he will only get worse and quickly die. Alternative treatments do little or nothing to prevent or slow multiple myeloma. I urge him to get treatment ASAP. If, on the other hand, he is content to just let life go, then rightly so, it is his choice.
If I may assume, he is possibly beaten down by his symptoms just now. I can assure you that treatment will lift him somewhat if he gives it a go. I know it did for me. When I started treatment, I actually felt the best I had in quite sometime. Probably because, without treatment, my bloods were lacking in so much. Yes, chemo can make you ill and all that. But what's the alternative?
As for yourself, do you have any friends who could help with the firewood? Do you have a local Masons or men shed? If you ask them for help, generally speaking, they will not turn a genuine case of need away. They may even provide some company for hubby. Give you some time out.
Vicki
-
vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Husband diagnosed 5 months ago; how to stay cheerful?
Suzanne:
My wife and I are oil-free vegan health nuts and very athletic / active. To make a very long story short, she started having severe (9 out of 10) bone pains that led to a multiple myeloma diagnosis at age 62. Started treatment last October. By January, bone pain was gone. Today, we are back to our old lifestyle and only take time off twice per month for maintenance therapy.
Go for treatment and get your lives back.
Brett
My wife and I are oil-free vegan health nuts and very athletic / active. To make a very long story short, she started having severe (9 out of 10) bone pains that led to a multiple myeloma diagnosis at age 62. Started treatment last October. By January, bone pain was gone. Today, we are back to our old lifestyle and only take time off twice per month for maintenance therapy.
Go for treatment and get your lives back.
Brett
-
Gcsi - Name: Brett
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: Oct 2, 2015 (MGUS 2002)
- Age at diagnosis: 62
Re: Husband diagnosed 5 months ago; how to stay cheerful?
I apologize for addressing a question you didn't ask, but like the others, I feel strongly it's important to determine the objective.
If the goal is to have the least pain possible at end of life, then a frank discussion about talking to hospice might be important.
If the goal is to live, have a life, while dramatically reducing pain, then chemo as soon as possible is vital.
Myeloma used to be a death sentence because there were not the options and therapies there are today. My local oncologist did her residency at Harvard and said myeloma patients were dying in droves. That's not the case today. Many myeloma patients these days are living 10 years and longer after their diagnosis. They are doing this because of therapy.
Your husband is young. It's heartbreaking for us to read that he is basically choosing to die when there is another choice. If that's deliberate, and a conscious choice, then I respect that. But if he is operating with a preconceived notion of what chemo for myeloma would consist of, and how myeloma is treated so to save his life and make it more, not less, liveable, then education ASAP is crucial.
If at some point in the future therapy is delivering a life your husband does not want to live, then he can always stop. But to not accept therapy and the vital years he could have left is tragic. There, I said it. It's tragic.
My heart goes out to you both.
If the goal is to have the least pain possible at end of life, then a frank discussion about talking to hospice might be important.
If the goal is to live, have a life, while dramatically reducing pain, then chemo as soon as possible is vital.
Myeloma used to be a death sentence because there were not the options and therapies there are today. My local oncologist did her residency at Harvard and said myeloma patients were dying in droves. That's not the case today. Many myeloma patients these days are living 10 years and longer after their diagnosis. They are doing this because of therapy.
Your husband is young. It's heartbreaking for us to read that he is basically choosing to die when there is another choice. If that's deliberate, and a conscious choice, then I respect that. But if he is operating with a preconceived notion of what chemo for myeloma would consist of, and how myeloma is treated so to save his life and make it more, not less, liveable, then education ASAP is crucial.
If at some point in the future therapy is delivering a life your husband does not want to live, then he can always stop. But to not accept therapy and the vital years he could have left is tragic. There, I said it. It's tragic.
My heart goes out to you both.
-
moonscape - Who do you know with myeloma?: me
- When were you/they diagnosed?: 11/2015
Re: Husband diagnosed 5 months ago; how to stay cheerful?
Thank you very VERY much for your advice ... it is really appreciated, and I will talk to my husband further about seeking treatment. We are only new to the community. We moved here last September. So we feel awkward asking for help from them, but we will make the move anyway.
-
Suzanne_NSW - Name: Suzanne
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 56
Re: Husband diagnosed 5 months ago; how to stay cheerful?
You don't say WHY your husband decided against treatment at this point. I will make an assumption that could be wrong, if so I apologize. If his decision is based on assumptions about what chemo will do to his life, he may well have inaccurate assumptions. I think my experience with initial treatment is true of the vast majority of patients on this forum. The many anti-myeloma drugs that are available are tolerated extremely well and often cause little to no side effects. I've used 5 different drugs, and none of them significantly altered my life. I continued to work full-time and enjoy my life. The good news is the disease was nearly totally wiped out.
The other question I have is whether your husband is seeing a myeloma specialist. As you will learn here, myeloma is pretty rare, and it is always recommended that you see a specialist if you can. They will be aware of the most advanced treatments, but they can also explain the disease and your treatment options the best.
I know I didn't answer your question and it may not be entirely helpful to have us all weigh in and second guess your husband's very personal and difficult decision. I hope we haven't scared you away from the forum or from asking questions. I've found the people here are incredibly caring and informative. I think we just don't want to see someone choose a treatment path that could be harmful based on incomplete information.
A bit more directly to your question, I found the first months after diagnosis to be a shock. I was a basket case and couldn't really come to terms with the news. Over time I've improved tremendously. I sought help from a counselor, I met with my myeloma specialist often and asked questions, I sought help here on this forum. All of these things improved my outlook, but time was probably my best medicine.
I wish you and your husband well. I hope you both find comfort to deal with a very difficult challenge.
The other question I have is whether your husband is seeing a myeloma specialist. As you will learn here, myeloma is pretty rare, and it is always recommended that you see a specialist if you can. They will be aware of the most advanced treatments, but they can also explain the disease and your treatment options the best.
I know I didn't answer your question and it may not be entirely helpful to have us all weigh in and second guess your husband's very personal and difficult decision. I hope we haven't scared you away from the forum or from asking questions. I've found the people here are incredibly caring and informative. I think we just don't want to see someone choose a treatment path that could be harmful based on incomplete information.
A bit more directly to your question, I found the first months after diagnosis to be a shock. I was a basket case and couldn't really come to terms with the news. Over time I've improved tremendously. I sought help from a counselor, I met with my myeloma specialist often and asked questions, I sought help here on this forum. All of these things improved my outlook, but time was probably my best medicine.
I wish you and your husband well. I hope you both find comfort to deal with a very difficult challenge.
-
Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Husband diagnosed 5 months ago; how to stay cheerful?
I usually don't post replies, but felt the need to do so on this one. The word "chemo" scares everyone . But there is chemo and there is CHEMO. Chemos are all different.
Most multiple myeloma patients are started on Velcade, an injection in the fatty part of his arm, Zometa, which is an infusion that helps heal the bones and make them stronger, and a Revlimid, which is a pill taken at home. Most people have no side effects. Your husband will not lose his hair, will not get sick, and can still go to work every day.
My husband would take his treatment, come home, do yard work, and work in the garden. Life was normal. Within 6 months he was in remission. That was 3 years ago.
I would rethink your plans about treatment. If you read further down, a man tells about having multiple myeloma for over 20 years. That's hope.
Most multiple myeloma patients are started on Velcade, an injection in the fatty part of his arm, Zometa, which is an infusion that helps heal the bones and make them stronger, and a Revlimid, which is a pill taken at home. Most people have no side effects. Your husband will not lose his hair, will not get sick, and can still go to work every day.
My husband would take his treatment, come home, do yard work, and work in the garden. Life was normal. Within 6 months he was in remission. That was 3 years ago.
I would rethink your plans about treatment. If you read further down, a man tells about having multiple myeloma for over 20 years. That's hope.
Re: Husband diagnosed 5 months ago; how to stay cheerful?
Hi Suzanne,
I really feel for you as I went through something similar. My husband did not do treatment in the beginning either, choosing to go an alternative route. Eventually, he got several compression fractures in his back and was in terrible pain without any pain meds. Feeling extremely desperate, I finally threatened him with divorce if he didn't go to see the specialist that I had found through my online research. He finally relented and we made it just in time on the edge of him going into kidney failure. He had to get a blood transfusion during his first treatment as his hemoglobin was so low. Apparently the nurses were taking bets as to whether or not he would be admitted to the hospital and if he would survive at all (we only found this out later of course). Looking at him today (two and half years later), you would never know what he's been through. He is doing very well in a clinical trial and has just recently returned to a regular work schedule.
Some feedback on alternative treatment: A staff member in our clinic told me very gently and kindly that first day we visited our new doctor- "Some cancers elicit a response to alternative treatments but myeloma is not one of those cancers."
What we have noticed is that the alternative treatment we did/are doing helps to keep one's body in the best shape to better withstand and integrate the side effects from some of the drugs, so there is value to alternative treatments, but they are not going to cure myeloma. They are not going to make it go away.
Another point: were/are you seeing a myeloma specialist? This is key as the world of myeloma is so complicated, it's hard for general oncologists to keep up with it all. We started out with a general oncologist who was also disgusted that we didn't want to start treatment. Needless to say, he was not a good fit for us. It's really worth finding a specialist and someone your husband can feel good about, someone he feels he can begin to trust. The right fit is out there!
Lastly, I don't think it's "selfish" that you are struggling to stay cheerful. I think it's a natural, human response to an extremely difficult situation. Perhaps you can hire some help with the chores around the house so you can take some of those off of your plate. It's important to take care of yourself as well, because if you don't, at some point you will crash and burn- hard. I understand the urge to drink whiskey in the corner. I had a few moments (and still do) in our saga where I gave in to that urge (although with me it was vodka! And yes, the mile-high laundry pile can wait!), but of course that doesn't solve the problem in the long run.
I do hope you can steer him in the direction of getting treatment- for his sake and yours.
Jeannie
I really feel for you as I went through something similar. My husband did not do treatment in the beginning either, choosing to go an alternative route. Eventually, he got several compression fractures in his back and was in terrible pain without any pain meds. Feeling extremely desperate, I finally threatened him with divorce if he didn't go to see the specialist that I had found through my online research. He finally relented and we made it just in time on the edge of him going into kidney failure. He had to get a blood transfusion during his first treatment as his hemoglobin was so low. Apparently the nurses were taking bets as to whether or not he would be admitted to the hospital and if he would survive at all (we only found this out later of course). Looking at him today (two and half years later), you would never know what he's been through. He is doing very well in a clinical trial and has just recently returned to a regular work schedule.
Some feedback on alternative treatment: A staff member in our clinic told me very gently and kindly that first day we visited our new doctor- "Some cancers elicit a response to alternative treatments but myeloma is not one of those cancers."
What we have noticed is that the alternative treatment we did/are doing helps to keep one's body in the best shape to better withstand and integrate the side effects from some of the drugs, so there is value to alternative treatments, but they are not going to cure myeloma. They are not going to make it go away.
Another point: were/are you seeing a myeloma specialist? This is key as the world of myeloma is so complicated, it's hard for general oncologists to keep up with it all. We started out with a general oncologist who was also disgusted that we didn't want to start treatment. Needless to say, he was not a good fit for us. It's really worth finding a specialist and someone your husband can feel good about, someone he feels he can begin to trust. The right fit is out there!
Lastly, I don't think it's "selfish" that you are struggling to stay cheerful. I think it's a natural, human response to an extremely difficult situation. Perhaps you can hire some help with the chores around the house so you can take some of those off of your plate. It's important to take care of yourself as well, because if you don't, at some point you will crash and burn- hard. I understand the urge to drink whiskey in the corner. I had a few moments (and still do) in our saga where I gave in to that urge (although with me it was vodka! And yes, the mile-high laundry pile can wait!), but of course that doesn't solve the problem in the long run.
I do hope you can steer him in the direction of getting treatment- for his sake and yours.
Jeannie
-
Jean Ruth Howard - Name: Jeannie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: November 2012
- Age at diagnosis: 47
Re: Husband diagnosed 5 months ago; how to stay cheerful?
Hi Suzanne,
I'm assuming by your name that you are in the Aussie state of New South Wales, which means that if your husband were to start treatment, which he should, he will likely be prescribed treatment with cyclophosphamide, Velcade, and dexamethasone (CyBorD), which tends to be a well-tolerated by patients, including my father.
I'm assuming by your name that you are in the Aussie state of New South Wales, which means that if your husband were to start treatment, which he should, he will likely be prescribed treatment with cyclophosphamide, Velcade, and dexamethasone (CyBorD), which tends to be a well-tolerated by patients, including my father.
-
Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Husband diagnosed 5 months ago; how to stay cheerful?
Your husband is very young and if he was in good health other than the myeloma diagnosis, treatment would give him his life back and yours. My husband was diagnosed in December of 2015 and, like your husband, he was a "burn the candle at both ends" kinda guy. It was very frustrating for him. Once we got the diagnosis, his kidneys were in bad shape and bone pain kept him from doing his usual.
Within one month of starting treatment with cyclophosphamide, Velcade, and dexamethasone (CyBorD), he was so much better. He did four months of induction and did nothing but feel better as time went on. He achieved a stringent complete remission (sCR) and then had a stem cell transplant the first of June. He is now beginning to go like he used to (maybe to bed a little earlier than he used to ... LoL). We go next week for post transplant tests to see how he is doing.
Our myeloma specialist told us from the beginning that myeloma is going toward being treated like a chronic illness. He assured us people can live longer all the time with all the new treatments that are being developed. My husband and I count on this!
I respect each individual's choices of their life and if in the end this is your husband's, then I hope you both can find peace in it. But as others have posted, he will get worse if he is not treated.
My best to you both in whatever he decides.
Within one month of starting treatment with cyclophosphamide, Velcade, and dexamethasone (CyBorD), he was so much better. He did four months of induction and did nothing but feel better as time went on. He achieved a stringent complete remission (sCR) and then had a stem cell transplant the first of June. He is now beginning to go like he used to (maybe to bed a little earlier than he used to ... LoL). We go next week for post transplant tests to see how he is doing.
Our myeloma specialist told us from the beginning that myeloma is going toward being treated like a chronic illness. He assured us people can live longer all the time with all the new treatments that are being developed. My husband and I count on this!
I respect each individual's choices of their life and if in the end this is your husband's, then I hope you both can find peace in it. But as others have posted, he will get worse if he is not treated.
My best to you both in whatever he decides.
-
dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
13 posts
• Page 1 of 2 • 1, 2
Return to Member Introductions / Personal Stories