[Fee316]

Mom recently diagnosed with Stage 2 multiple myeloma

by Fee316 on Sat Dec 10, 2016 11:46 pm

My mom was diagnosed with Stage 2 multiple myeloma. This is 6 years after beating Stage 2 breast cancer.

This started at the beginning of November 2016. She started having lower back pain. Her primary physician sent her to an orthopedic surgeon. Two weeks later an MRI was done and unfortunately because of the Thanksgiving holiday, the orthopedic doctor wasn't able to see her until November 30th to give results. She was prescribed pain meds and was walking around with cane as pain increased and was having numbness in legs / feet with incontinence.

On November 21 she couldn't take the pain any longer and we took her to the emergency room (ER). After several tests and acquiring the MRI results, the doctors found multiple bone lesions and one at the tail of the spine that was causing spinal compression. They said it was likely to be myeloma, but also possibly metastatic breast cancer.

After another week of tests, including a bone marrow biopsy, MRI, 24-hour urine test, etc, they concluded she had multiple myeloma. The oncologist who would be leading her case had been on vacation and another oncologist / hematologist gave us the news of the diagnosis. He also said there were lesions found in the abdomen and chest wall, and a mass (couldn't determine if it was tumor) near the pancreas. Also, a 15 cm tumor in the pelvic area and tumors on sacrum.

He started her immediately on radiation of the spine to remove the tumor and alleviate pain and hopefully numbness. He feared paralysis might occur if we didn't move quickly. She was unable to walk or move. She started radiation that day.

I've been researching non stop since the night she went to ER and myeloma was suspected. I tink I've read every study on this (not really, but maybe), staying up til early morning and going to hospital (she was just released today after 3 weeks). I understand I'm no doctor or expert, and that doing research online can be good but also very bad and disheartening at times. In a weird way, I think it was more of a coping tool. A way to control something i have no control over. Since this was so shocking to our family and it was devastating to hear.

Her doctor who is leading her case came back from holiday and reviewed my mom's skeletal x ray and CT scan. She said they found the soft tissue masses in the abdomen, chest wall, near the pancreas and a mass (couldn't specify if it was tumor) on the head of pancreas, as well, and a 7 cm mass in between the pancreas and abdomen and two tiny masses near heart and a spot on kidney.

We knew of most of these masses, but hearing one was actually on the head of the pancreas and near the heart / kidney was so scary and sad. My mom has had no symptoms or pain from any of the soft tissue masses, only back pain from a plasmacytoma on the spine, and a bit of fatigue. The doctor told my mom this was very "uncharacteristic" of multiple myeloma and was wanting to get a biopsy of masses to check for metastatic breast cancer. She never mentioned extramedullary myeloma until I asked about it a day later. She said these masses were most likely malignant and said it was either extramedullary myeloma or metastatic breast cancer.

When I asked my mom's radiation oncologist if they find breast cancer in soft tissue masses if that meant no multiple myeloma, and would it be considered just metastatic breast cancer, she said no, and that she does have multiple myeloma and she'd have both. I asked her what percent of her bone marrow has the multiple myeloma cancer, and she said she didn't know off top of head and she'd get back to me (never did).

Side note: The oncologist who had previously treated her for breast cancer had noted a spike in white blood cells a couple years before on two separate occasions and never followed up.

A gastroenterologist did an endoscopic ultrasound (EUS) and fine needle aspiration this past Tuesday (Dec 6, 2016) on soft tissue masses and said she found nothing on the head of the pancreas, no cancer in any of these masses on the chest wall, abdomen, or in the mass between abdomen and pancreas, found no tumor near the heart or kidney, and no cancer in bone marrow around pancreas or anywhere in other areas. Although a little "haziness" was found near the pancreas, she didn't find cancerous, but is sending to the lab and we'll know more in 5-7 days.

So then my mom's lead oncologist said it does seem to be solely multiple myeloma. Mind you we've never had a sit down with the oncologist. She's very rushed and usually calls my mom to talk to her, and I felt we weren't getting specifics or proper questions answered. I inquired about getting an oncologist / hematologist specifically who specializes in blood disorders / multiple myeloma after finding out my moms lead oncologist specializes in gastro­intestinal tract cancers. I stressed to my mom from my research if she wasn't open to going to a multiple myeloma treat­ment center (which most people can't due to insurance, or affects on treatment from being away from home), then it's a must to have an oncologist / hematologist who treats multiple myeloma and blood disorders. She agreed, so I found one in our area who seems very experienced and has been part of published studies and treats multiple myeloma patients.

My mom was released today, and the doctor who was leading case was professional about the decision to change doctors, and I asked her about getting me copies of test results she said she'd get for me (she did not), if she knew staging (she said she'd have to look at everything and get back to me), and I asked her what was the benign tissue in masses and I think she was indicating neoplasm.

I really tried in the 3 weeks my mom was in hospital to walk that line of wanting to ask important, informative questions to seek answers and get specifics like bone marrow biopsy results, bones affected, percent of cancer in bone marrow, etc, and not wanting to be that over-reaching ,obnoxious family member who thinks she knows more than the doctor. However, I always got run around when I was told I'd get a copy of an MRI or bone marrow biopsy report, I was never given them.

Anyways, the lead doctor wished my mom luck, said she works with the new doctor and he is a good doctor. She called my mom at 9 pm last night at the hospital and said she was Stage 2. This morning at discharge I was told I could get test results through the online hospital patient portal. Nothing was given to me in those 3 weeks in hospital.

My mom's pain has diminished, she is walking with walker and takes few steps with no assistance, and she had physical therapy (PT) last week almost daily and will continue getting it at her house . Her last radiation for plasma­cytomas in pelvic area, back of neck, and lower spine will be done this Wednesday, totaling 18 treatments. She's supposed to start chemo a week after radiation.

I still have many many questions that I hope the new doctor will answer. We are supposed to meet him next week some time. We always felt her other oncologist, although very experienced, was very rushed and phoned in a lot. I'm still considering a second opinion (well I guess technically a third opinion after hearing the new doctor's diagnosis and treatment plan, but not sure yet).

So sorry for long post. I'd love to hear anyone's opinions / advice.

Thanks everyone. My family and I are full of faith and do really believe in the power of positivity and of course knowledge of this cancer. So crazy how I never knew or heard of myeloma three weeks ago and now it's my life. I wish you all the best in your journeys and hope to become great friends.

[NStewart]

Re: Mom recently diagnosed with Stage 2 multiple myeloma

by NStewart on Tue Dec 13, 2016 11:55 am

Welcome to one of the most informative forums you could find related to myeloma. I'm sorry that you've had find us, but you will learn a lot and make friends who can help to answer some of your questions and maybe help you formulate questions for the oncologist. It's too bad that your mother has had such a complicated introduction to this disease, but with a history of breast cancer that clouds the issue of diagnosis.

One of the most important things to do when first being diagnosed with myeloma is to find a myeloma specialist to at least have a consult with. It sounds like the oncologist that your mother is going to see this week may be one. Bring a list of questions for the doctor and ask if you can record your mother's visit with him/her. Depending on what is recommended for a treatment regimen your mother should begin to feel a lot better fairly soon. The regular beginning therapies are quite easy to tolerate for most people. The recovery from the spinal injuries will take longer to heal.

All the best to your mother as she begins this new chapter in her life.
Nancy in Phila

[mikeb]

Re: Mom recently diagnosed with Stage 2 multiple myeloma

by mikeb on Wed Dec 14, 2016 10:31 am

Hi Fee316,
Sorry I'm a few days late with this reply; I'm catching up after being away from the Forum for a few days. Mainly I want to second what my friend Nancy said in welcoming you and encouraging you to seek out a myeloma specialist, at least for a consultation. They are often happy to work with local oncologists if your specialist is located some distance from your home. If you let us know where your mother lives, folks on the Forum can recommend treatment centers in the area near your mom. I think talking with a specialist is extra important in your mom's case to help separate out impacts due to myeloma vs beast cancer.

The other thing I wanted to say is simply to let you know that we all understand how overwhelmed you are feeling right now. We've gone through that too. Multiple myeloma is a tough diagnosis to receive, for yourself or for someone you love. And there's so much info out on the web to sift through. It sounds like you've already learned a lot about myeloma in just 3 weeks. By learning what you can and asking questions, you are doing a lot to help your mother.

Best wishes to your mother and to you. Please keep us posted on how she is doing.

Mike

[TerryH]

Re: Mom recently diagnosed with Stage 2 multiple myeloma

by TerryH on Wed Dec 14, 2016 10:51 am

Welcome to the forum, Fee. I'm sure you will find it very helpful.

Nancy and Mike - In case you missed it, Fee posted here,

https://myelomabeacon.org/forum/austin-texas-multiple-myeloma-specialists-t5588.html#p48356

about where her mother lives and asked for advice regarding myeloma specialists.

[mikeb]

Re: Mom recently diagnosed with Stage 2 multiple myeloma

by mikeb on Thu Dec 15, 2016 10:41 pm

Thanks, Terry. I didn't check in other threads before posting my reply. Should have done that.
Mike