I have been reading post on here for the last month. On Dec 14th 2013, I took my husband to the ER with and pain. He was having it radiate to shoulder and based on the meal he had eaten I was convinced he was having a gall bladder attack. The ER doctor came back after a CT of the abdomen and told us he had several lytic lesions and a fractured rib - hence the pain.
We started some preliminary tests the following Monday and saw the oncologist on Tuesday. Things moved very quickly with PAC placement, bone marrow aspiration and several other tests. His bone marrow was 85% involved and he was beginning to have pain. Since the doctor felt he would have to have a stem cell transplant we were sent to Chicago for an evaluation before treatment was started. The doctor in Chicago offered a clinical trial; however we live 2 hours away from Chicago and have an 11 yo we are trying to keep having as normal a life as possible.so we declined.
Saw the local oncologist and a treatment plan was formed. Here is where I get upset - it took 6 weeks and a lot of screaming to get the Revlimid here. My insurance company required 5 levels of approval and the co-pay had to be taken care of by my insurance as a clause required it per our plan. So i was to receive the first shipment on Monday Feb 10th. My husband ended up in the ER on the `11th with shortness of breath, diaphoresis, inability to urinate - he was deathly ill. He had 2 throacentesis and they removed over 2 liters from his lungs, he has liver enzymes through the roof and ascites.
He started Velcade on the 12th and the Revlimid, dex, Acyclovir, asa. He has had 2 injections so far and is better than before going into the hospital - oh also he was very confused, could not hold a conversation and had neruo changes to degrees that he could not hold anything in his hands, his fine motor skills were gone. This is ALL BEFORE any treatment.
Our route to treatment felt like I was literally fighting to get him what he needs. I am an RN so unfortunately I understand how critical it can get quickly. I thought I was gonna lose him.
So - have any other had pleural effusions that required draining or ascites? My husband is not a drinker so his liver is not having issues because of something he has done,
I am not handling this well. I feel so alone and feel like I am watching him melt away. We are just at the beginning of a long road. I am doing everything now - he is unable. I work full time (I carry the insurance), take care of everything in the home, child, dogs, his medical needs. I don't know how to do this long term without cracking - being a nurse I feel like it should be easier but its not.
How do you all manage?
Forums
6 posts
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Re: New to board - how do you manage all the challenges?
I am so sorry you are going through it this way ... especially since you in "the industry" per se, you think you would have some better paved roads to obtain the care you husband needed. The fact that it took two months after diagnosis alone to finally get his treatment is insane, and I would guess all those complications are a result of that delay. I hope your husband continues to respond quickly to the treatments.
It sounds to me that you are overloaded. It may be something out of the question, but it may be worth enlisting the help of a family member to move-in to assist or something. I was diagnosed at stage iii with collapsed vertebrae and just started to go south, and I needed lots of constant assistance. I would think it would benefit you largely to get an extra pair of hands in some way.
It sounds to me that you are overloaded. It may be something out of the question, but it may be worth enlisting the help of a family member to move-in to assist or something. I was diagnosed at stage iii with collapsed vertebrae and just started to go south, and I needed lots of constant assistance. I would think it would benefit you largely to get an extra pair of hands in some way.
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StandingTall - Who do you know with myeloma?: Me! yay!!
- When were you/they diagnosed?: Sept. 2013
- Age at diagnosis: 39
Re: New to board
Hopefully your husband is going to respond well to his treatment and his condition begins to improve soon. I, too, had problems getting my first delivery of Revlimid when I started treatment because of insurance, but once I was on board it came regularly every month after that.
Ask to speak with the social worker, if there is one, where your husband is being treated. You need some emotional support ASAP. Contact the IMF and ask them if there is a support group in your area. The groups are for both patients and caregivers. There may also be a caregiver support group in your area. In Philadelphia there is one at the Cancer Support Community, which is a national organization.
Enlist family and friends to do some of the chores that need to be done and can be done by anyone. Someone can do your grocery shopping for you. For the weekly visits for his weekly injections of Velcade, someone else could take your husband as long as nothing important is scheduled on the same day.
Although you are happier with using your local oncologist, I suggest that you maintain a relationship with the specialist that your husband saw in Chicago. He can consult with your local oncologist and make the major treatment decisions that the local doctor follows. Just because you declined to be part of the clinical trial doesn't mean that you can't be seen by the specialist. Usually the specialist only needs to be seen in person a couple times of year while your local oncologist sees your husband more often.
Good luck with managing all of this with your husband. Things should begin to be a little easier as his treatment progresses.
Nancy in Phila
Ask to speak with the social worker, if there is one, where your husband is being treated. You need some emotional support ASAP. Contact the IMF and ask them if there is a support group in your area. The groups are for both patients and caregivers. There may also be a caregiver support group in your area. In Philadelphia there is one at the Cancer Support Community, which is a national organization.
Enlist family and friends to do some of the chores that need to be done and can be done by anyone. Someone can do your grocery shopping for you. For the weekly visits for his weekly injections of Velcade, someone else could take your husband as long as nothing important is scheduled on the same day.
Although you are happier with using your local oncologist, I suggest that you maintain a relationship with the specialist that your husband saw in Chicago. He can consult with your local oncologist and make the major treatment decisions that the local doctor follows. Just because you declined to be part of the clinical trial doesn't mean that you can't be seen by the specialist. Usually the specialist only needs to be seen in person a couple times of year while your local oncologist sees your husband more often.
Good luck with managing all of this with your husband. Things should begin to be a little easier as his treatment progresses.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: New to board
It is real difficulties and sufferings after sending your husband to ER for treatments of multiple myeloma symptoms. All patients or their supporters shall have to a very good relations with their oncologist of hemology to approve all chemotherapys' medicines of Velcade, Revlimid...etc from insurance companies to treat their multiple myeloma in ASAP, then doctors do know how serious to take these procedures to have correct treatments to control multiple myeloma symptoms and kill these abnormal cancer cells in the beginning of several chemotherapy cycles. Then you make a decision of SCT, but we do not if the treatment is very successful. Because the SCT will a final step to have multiple myeloma in control and risky our life too.
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Anonymous
Re: New to board
It probably doesn't feel like it right now, but it does get better over time, and with treatment. Do you have people around you who can help you? You need to accept any offers of help so that you don't burn out yourself?
It is not easy being a caregiver to others, and then having to be a caregiver at home. I have a hard time understanding that I need the help, but in the end, I don't feel like I have much of a choice, I just can't do it all. Neither can you.
Wishing you all well.
It is not easy being a caregiver to others, and then having to be a caregiver at home. I have a hard time understanding that I need the help, but in the end, I don't feel like I have much of a choice, I just can't do it all. Neither can you.
Wishing you all well.
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cindyb
Re: New to board
Hello,
A couple of considerations about your husbands clinical problems. Pleural effusions and ascities can be caused by many things but in myeloma it makes me wonder about secondary amyloidosis, heart and/or kidney problems.
#1. Amyoid caused by myeloma can deposit in the lining of the lungs and abdomen and cause pleural effusions and ascities
#2. Amyloid and myeloma damage to the kidneys can cause massive loss of body proteins in the urine (nephrotic syndrome) and low protein in the bloodstream and body can cause fluid retention ascites and pleural effusions.
#3. Amyloid damage to the heart can cause heart failure that often is undiagnosed by cardiologists. The heart looks relatively normal with routine heart testing (like an echocardiogram) but it is actually damaged.
Your husband should have a 24 hour urine test looking for the amount of protein spilled by the kidney. In addition his heart testing should be done and interpreted specifically looking for amyloidosis. Specific tests that can help with a diagnosis of cardiac amyloid include an echocardiogram looking for ventricular hypertrophy (even mild) and diastolic dysfunction, cardiac MRI and blood testing for troponin T and NT-proBNP.
I wish you and your husband the very best in your challenges dealing with this difficult disease.
A couple of considerations about your husbands clinical problems. Pleural effusions and ascities can be caused by many things but in myeloma it makes me wonder about secondary amyloidosis, heart and/or kidney problems.
#1. Amyoid caused by myeloma can deposit in the lining of the lungs and abdomen and cause pleural effusions and ascities
#2. Amyloid and myeloma damage to the kidneys can cause massive loss of body proteins in the urine (nephrotic syndrome) and low protein in the bloodstream and body can cause fluid retention ascites and pleural effusions.
#3. Amyloid damage to the heart can cause heart failure that often is undiagnosed by cardiologists. The heart looks relatively normal with routine heart testing (like an echocardiogram) but it is actually damaged.
Your husband should have a 24 hour urine test looking for the amount of protein spilled by the kidney. In addition his heart testing should be done and interpreted specifically looking for amyloidosis. Specific tests that can help with a diagnosis of cardiac amyloid include an echocardiogram looking for ventricular hypertrophy (even mild) and diastolic dysfunction, cardiac MRI and blood testing for troponin T and NT-proBNP.
I wish you and your husband the very best in your challenges dealing with this difficult disease.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
6 posts
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