Family member diagnosed with MM. What to expect

Islandinthesun

Hello everyone,

I was just told my 47y/o sister was diagnosed with MM. I know nothing about the disease and doing web searches is confusing. On average it says that life expectancy is five years. This is distressing. Do I really only have five more years with my sister?

As only a family member, is there anything I can do physically, emotionally, to support her? Thanks

MMcaregiver

Hi Island in the Sun

I am so sorry to hear about your sister!

There are many good treatment options and trials for multiple myeloma. Please don't take what you read on life expectancy to heart, rather you and your sister can talk through all her options with her team. We have people in our support group going on 12 and 14 years strong with multiple myeloma.

Here is a little of our backstory- my husband was diagnosed Sept 2018, had a stem cell transplant in 2019, and is in remission now. There are other treatments options besides transplant, each with pros and cons. But the point is- there are options. New options are continually being studied and reviewed.

A few organizations that can help:

MMRF: Multiple Myeloma Research Foundation

IMF: International Myeloma Foundation

Both of these offer education and support. The IMF has local support groups as well. Some are in person, others are virtual right now.

Back to your sister, does she have a multiple myeloma specialist? Many multiple myeloma patients prefer to seek a multiple myeloma specialist for treatment.

If your sister does go the transplant route, please don't hesitate to let us know if you have any questions. My husband was 47 when diagnosed.

Bmtinfonet.org is a great resource of patients and families who are looking at stem cell transplant as an option.

Something husband said helped him was having a family member ag each appointment, to take notes and also to keep track of his questions in the same notebook. Sometimes he used it, other times, I ory sister would jot down notes for him. These notes helped us all remember and discuss his treatment options and such after the appointment.

Please let us know how she is doing, how you are doing, and how we can help. You and your sister are not alone!

scottjtfrank

Hi there,

I was diagnosed with MM in November of 2020. I underwent chemo (Velcade with dex and a bone strengthening infusion) for 4 months. I was allergic to Rivlimid, so Cybor D replaced it because X was too expensive. I was treated with radiation in December of 2020, then the nerve pain arrived in April making it impossible to sleep for about 2 months. Eventually, with an epidural, the pain subsided. I would not take opioids.

On June 1, after four months of chemo etc., I had stem cell replacement, my own stem cells. This put me into remission which is where I currently abide regaining strength and muscle mass.

I now have near constant nerve pain in my right leg and spasming in the larger muscles of my butt that may be pulling on the nerve. I'm in pt and trying everything possible to remedy this issue, but am also looking for suggestions. I'm not going to take Gabapentin.

I've gotten a new mattress, I stretch and exercise daily. I've had a couple of trigger point injections, I've had one cortisone injection, very little seems to help. My hip flexors seem really tight as do the muscles of my butt.

Any suggestions would be appreciated.

scott

MMcaregiver

Hi Scott

My husband has found some relief with accupuncture, which is done through thr supportive oncology center at hia ancer center. His pain was neuropathy related.

He had never tried it before, and was skeptical but desperate for relief. He started with weekly sessions, and as he improved, went to every other week, and now it is monthly (more often if he needs it)

It has helped so much! I just wanted to mention, in case it may help you as well.

I wish you all the best. He was diagnosed 2019, stem cell transplant 2020.

scottjtfrank

Thanks so much for your note. Yes, that has also helped me in the past. I'll try it again.

scott

JaneWonderWoman

I had Thyroid cancer in 2022 and was recently diagnosed with Multiple Myeloma. I found a terrific website HeartTree Foundation that is very thorough in explaining everything about it.

just4jme

https://csn.cancer.org/discussion/comment/1710216#Comment_1710216

L-Glutamine? It may help. I’m currently looking through case studies for my husband.

scottjtfrank

Island In The Sun,

Walk before, during and after treatment. Make the blood move.

immune system support smoothie.

7 apricot kernels, 2 tablespoons of Amla powder, chia seeds 2 tbls, Hulled Oranic Hemp seeds 2 tablespoons, the zest of 1 lemon, 1 juiced organic lemon, a heaping handful of organic blueberries or black berries, just past green banana, a ripe avocado, 1/4 cup of protein powder organic, not whey or pea. Some organic juice (pomegranate or something not too sweet, but organic , some organic coconut water, 1/2 teaspoon of cayenne pepper, 1 leg of ginger root cut up, 1 teaspoon or organic turmeric powder, 1 teaspoon of cinnamon.

sometimes I add a green: mint...spinach...sometimes both. Keep it organic. Limes can replace lemons. You can add an orange or grapefruit if you like those better. Sometimes I use grapefruit seed extract as another source of vitamin c.

Alpha Lipoic acid has helped with Neuropathy from the chemo. If he's going to have radiation please tell him to ask the doctor what to expect.

Depending on where his nerves are in proximity to the tumors, he could run into collateral nerve damage after 3-4 months.

JaneWonderWoman

Every nerve in the peripheral system has a specific job. Symptoms depend on the type of nerves affected. Nerves are divided into:

• Sensory nerves that receive sensation, such as temperature, pain, vibration or touch, from the skin.
• Motor nerves that control muscle movement.
• Autonomic nerves that control functions such as blood pressure, sweating, heart rate, digestion and bladder function.

Symptoms of peripheral neuropathy might include:

• Gradual onset of numbness, prickling, or tingling in your feet or hands. These sensations can spread upward into your legs and arms.
• Sharp, jabbing, throbbing or burning pain.
• Extreme sensitivity to touch.
• Pain during activities that shouldn't cause pain, such as pain in your feet when putting weight on them or when they're under a blanket.
• Lack of coordination and falling.
• Muscle weakness.
• Feeling as if you're wearing gloves or socks when you're not.
• Inability to move if motor nerves are affected.

If autonomic nerves are affected, symptoms might include:

• Heat intolerance.
• Excessive sweating or not being able to sweat.
• Bowel, bladder or digestive problems.
• Drops in blood pressure, causing dizziness or lightheadedness.

Peripheral neuropathy can affect one nerve, called mononeuropathy. If it affects two or more nerves in different areas, it's called multiple mononeuropathy, and if it affects many nerves, it's called polyneuropathy. Carpal tunnel syndrome is an example of mononeuropathy. Most people with peripheral neuropathy have polyneuropathy.

It sounds like you have sensory and motor neuropathy in one leg/buttocks region. Have you had an EMG to determine if the nerve is damaged?