Hi,
My name is Tisha.
My mom started to suffer from progressive back pain in January 2018. Through x-rays it was discovered that she had two compression fractures in her spine. A fall down the stairs a couple months later led to what we thought was a fracture in her ribs (later discovered that it was in fact broken).
She had become quite tired and in May when she went for her annual check up the blood tests revealed she had high levels of calcium in her blood. We were sent to the ER to get blood work and IV fluids. We got the initial prognosis of Stage 3 multiple myeloma that night. Further tests showed that she had lesions in her brain, shoulder blades, and arms. She spent the next week and a half in hospital and was discharged into the care of family and friends.
Since May 17th we have been on an emotional roll coaster. At first things seemed to be getting better, although my mom's appetite had gone down and she had lost 10 -15 pounds. Her first visit with the oncologist went well, the cancer had been reduced by 50%, and she seemed to be on the mend (other than the pain).
Following that was a constant readjustment of pain medications from Tylenol (acetaminophen / paracetamol), then morphone, hydromorphone, and now a fentanyl patch. The side effects from all of that sent my mom on a bit of a tail spin of hallucinations, tiredness, constipation and depression.
She is back in the hospital and we have been told that another tumour was found in her brain and the first line of treatment (Revlimid and dexamethasone) is no longer working and they need to start Velcade treatment. We are currently awaiting test results to see how effective the treatment has been.
As if all of that wasn't enough, they have also identified a genetic component in her blood that is typically found in lymphoma patients; to our knowledge, my mom doesn't have lymphoma.
It is hard to see my mom who was a highly active and basically healthy 69 year old woman having to go through all of this. Her quality life has really diminished.
Forums
5 posts
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TMacEacheron - Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: May 7, 2018
- Age at diagnosis: 69
Re: Mom, diagnosed in May, but still struggling
Hi Tisha,
I am so sorry to hear about your mom and that your family is now on this journey. My husband and I joined recently as well. And we feel your pain. Keep us posted and know that this community is amazing with information and support. Blessings to you, your mom, and your family.
I am so sorry to hear about your mom and that your family is now on this journey. My husband and I joined recently as well. And we feel your pain. Keep us posted and know that this community is amazing with information and support. Blessings to you, your mom, and your family.
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shebert - Name: Shirley H
- Who do you know with myeloma?: Husband (Stephen)
- When were you/they diagnosed?: May 2018
- Age at diagnosis: 54
Re: Mom, diagnosed in May, but still struggling
I am so sorry your mom is suffering. This is a great place to become both encouraged and educated as you travel through this with her!
The best comfort I can give you right now is to say that my husband was suffering greatly with myeloma for quite awhile, more so when he fractured his femur last year due to a tumor. It didn't heal even a little in six months, so an orthopedic oncologist did a long-shank hip replacement, in essence giving him a metal femur. Just before the fracture, he began taking Darzalex, as his previous two-drug combinations had not been effective. Darzalex hasn't gotten rid of the myeloma entirely, but it has reduced the monoclonal protein levels in his blood some and has kept them stable now for a year and a half. He is back at work now and has no problems other than a bit of a limp, constant pain in one leg muscle from the surgery, and some fatigue. He looks great!
I just wanted to let you know that things can get better.
The best comfort I can give you right now is to say that my husband was suffering greatly with myeloma for quite awhile, more so when he fractured his femur last year due to a tumor. It didn't heal even a little in six months, so an orthopedic oncologist did a long-shank hip replacement, in essence giving him a metal femur. Just before the fracture, he began taking Darzalex, as his previous two-drug combinations had not been effective. Darzalex hasn't gotten rid of the myeloma entirely, but it has reduced the monoclonal protein levels in his blood some and has kept them stable now for a year and a half. He is back at work now and has no problems other than a bit of a limp, constant pain in one leg muscle from the surgery, and some fatigue. He looks great!
I just wanted to let you know that things can get better.
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vmeyer - Name: vmeyer
- Who do you know with myeloma?: my husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 65
Re: Mom, diagnosed in May, but still struggling
Thank you for the kind messages and support, I really appreciate it. Hopefully there will be a light at the end of the tunnel soon! It definitely gives me more confidence to hear that others have struggled and are now in a better spot. I will definitely share these stories with my mom as well. Thanks!
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TMacEacheron - Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: May 7, 2018
- Age at diagnosis: 69
Re: Mom, diagnosed in May, but still struggling
My husband has a unique other problem regarding a compression fracture at a screw when they did his back stabilization after spine tumor removal. He is scheduled for another WARP MRI (WARP is a different MRI machine due to hardware in the spine) soon, and a follow up with his neuro-oncologist to discuss repair. He also scheduled an appointment with an orthopaedic surgeon for a second opinion. Keep us posted how your mom is doing. Many hugs to you.
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shebert - Name: Shirley H
- Who do you know with myeloma?: Husband (Stephen)
- When were you/they diagnosed?: May 2018
- Age at diagnosis: 54
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