56-Year-Old Mom of Two’s Constant & Painful ‘Intense Tingling’ Turned Out To Be Blood Cancer

Multiple Myeloma: The Basics & New Progress

• Carol McGachie, 56, was diagnosed with multiple myeloma—a rare type of blood cancer—after experiencing a constant, painful “intense tingling” moving through her body, up her legs and down her arms. She received her diagnosis nearly one year after her symptoms began and now she’s urging others to be their own advocate when it comes to health.
• Multiple myeloma is a rare type of blood cancer that hinders the body’s ability to fight infections. It’s difficult to diagnose because its symptoms are “non-specific,” Dr. Nina Shah, a hematologist at UCSF, tells SurvivorNet.
• Multiple myeloma can cause symptoms such as weakness, dizziness, bone pain, and confusion, among other symptoms. Doctors use blood and urine tests and imaging tests such as X-rays or MRIs to help diagnose multiple myeloma and to guide treatment options.
• The standard treatment approach for multiple myeloma goes from the induction phase, the stem-cell transplant phase, and then the maintenance phase. Since multiple myeloma patients face a higher chance of relapse (the cancer coming back), maintenance treatment is important because it can extend periods of remission.
• The chemotherapy drug Revlimid (generic name lenalidomide) is a type of maintenance treatment that has been shown to improve survival for patients living with multiple myeloma. Other treatments also exist for relapsed patients.
• For a growing number of myeloma patients, there are effective options to manage the disease. In some cases people can live with myeloma almost as a chronic disease.

Carol McGachie, a mom of two from West Lothian in Scotland, was diagnosed with multiple myeloma—a rare type of blood cancer—after experiencing a painful "intense tingling" throughout her body that wouldn't go away. The 56-year-old, who was initially given pain medication to combat her back pain, suffered from difficulty sleeping amid the discomfort, and constant pain that moved up through her legs and down her arms, received her diagnosis after undergoing testing and scans for about a year. Speaking to BBC Scotland News in a recent interview, "I felt like I had been plugged into the mains. It's an intense tingling that won't go away. You can't feel your skin or your hands properly. "It's worse than pins and needles but on a similar vibe and a lot more painful."

Now, as McGachie is in remission after six months of chemotherapy starting in October 2022, she admits to BBC Scotland News, "You do feel sorry for yourself in the beginning. I know it's incurable and it will come back. "Every time you get aches and pains you think, 'Is it back?' It is a bit of a nightmare. Sometimes it feels like you live from test results to test results every three months." McGachie, a mom to her biological son Ross and daughter Emma, and step-mom to two children, explained further, "I know it's always going to be there and I don't block it out, but I try to move on a bit and it's not my central focus anymore. "Having fun with my husband Michael really helps keep it off my mind. He is fantastic." Since going into remission, McGachie credits the medicine she's taking for her nerve pain which prevents her from feeling like an electric shock is going through her body. She added, "I'm still aware of it in the tips of my fingers and toes but it doesn't go up my legs and down my arms now. If I'm not feeling well or if I have a virus or a cold it comes back a bit. "It feels like I have burnt fingers, I have that permanently all the time now." In regard to the months that passed before learning she had myeloma, McGachie said, "Thankfully they found it before I had any organ damage. "My advice would be: You know your own body so be more vocal and push a bit more with the doctor, rather than accept their word that it's nothing to worry about." "You have to trust your instincts and not be embarrassed to keep going back to the doctor," she concluded. McGachie has also urged her doctors to be aware of the symptoms she had to better help others who may be experiencing something similar.

Understanding Multiple Myeloma

Multiple myeloma is a rare and incurable type of blood cancer. When you have this cancer, white blood cells called plasma cells (the cells that make antibodies to fight infections) in your bone marrow grow out of proportion to healthy cells. Those abnormal cells leave less room for your body’s healthy blood cells to fight infections. They can also spread to other parts of your body and cause problems with organs like your kidneys. RELATED: Multiple Myeloma: Prevention & Screening “In general, having blood cancer means that your bone marrow is not functioning correctly,” Dr. Nina Shah , a hematologist at the University of California San Francisco, explained to SurvivorNet. Known risk factors for multiple myeloma include your age, family history of cancer, and if you have monoclonal gammopathy of undetermined significance (MGUS). MGUS is a condition that occurs when you have too much monoclonal protein in your blood and bone marrow. Most people diagnosed are in their 60s. However, people younger than 60 can still get this type of cancer also, if you have a close relative with multiple myeloma that can increase your risk. WATCH: Recognizing multiple myeloma symptoms. Multiple myeloma can cause symptoms such as weakness, dizziness, bone pain, and confusion, among other symptoms. Doctors use blood and urine tests and imaging tests such as X-rays or MRIs to help diagnose multiple myeloma and to guide treatment options. Ultimately, a bone marrow biopsy will confirm the diagnosis.

Helping Patients Better Understand Multiple Myeloma

• Can Multiple Myeloma Patients Achieve a Durable Remission After Induction Therapy & Skip or Delay a Stem Cell Transplant?
• Diagnosis: Do I Have Multiple Myeloma?
• Choosing the Best Treatment for Relapsed Multiple Myeloma
• Antibody as Part of Initial Treatment For Multiple Myeloma?
• A Great New Option For Multiple Myeloma Patients: Daratumumab Now Available As a Quick Shot, Replacing Long Infusions
• Are the Treatments the Same for a Second or Third Relapse of Multiple Myeloma?
• Bone Marrow Biopsies: ‘A Vital Part of Diagnosing and Staging Multiple Myeloma’

Treatment Options for Multiple Myeloma

Treatment for multiple myeloma depends on your risk level. Some patients are considered standard risk, while others are high-risk. Your risk depends on irregularities in the chromosomes of their cancer cells:

• Standard Risk – Extra copies of some chromosomes typically characterize this.
• High Risk – A missing part of chromosome number 17 typically characterizes this

These gene differences control the aggressiveness of the cancer cells. According to Dr. Kenneth Anderson , director of the Multiple Myeloma Center at Dana Farber Cancer Institute, standard risk has “a better prognosis.” In contrast, high-risk myeloma “confers a much poorer outcome.” RELATED: Diseases that Precede Multiple Myeloma: MGUS The standard treatment approach for multiple myeloma goes from the induction phase, the stem-cell transplant phase, and then the maintenance phase.

• Induction Phase : This phase is the same regardless of risk. It consists of triplet drug therapy, which includes an immunomodulatory drug (Revlimid or Pomalyst), a proteasome inhibitor (Kyprolis, Velcade, or Ninlaro), and a steroid (dexamethasone or prednisone).
• Stem-Cell Transplant Phase : This phase is the same regardless of risk. It consists of chemotherapy coupled with a stem-cell transplant.
• Maintenance Phase : This phase will differ based on the risk profile.

Maintenance treatment is essential because it keeps the cancer at bay. Since multiple myeloma patients face the risk of relapse even if the cancer is put into remission, maintenance treatment helps keep the cancer in remission for more extended periods. SurvivorNet previously shared retired journalist Tom Brokaw’s cancer treatment journey, which includes the maintenance treatment Revlimid (generic name lenalidomide) . This treatment is an oral medication that has helped treat patients living with multiple myeloma. Combined with other therapies, standard doses of lenalidomide kill off myeloma cells. WATCH: Tom Brokaw explains his cancer journey and breakthrough treatment. This drug activates immune cells that kill bacteria, viruses, and cancers. It also reduces vital blood flow to cancerous tumors, helping kill them. However, some patients don’t tolerate lenalidomide well because of some of its potential side effects, including nausea, vomiting, swelling of the limbs and skin, and liver problems. RELATED: When Multiple Myeloma Returns, SurvivorNet’s Resources WATCH: What Is the Standard of Care for the First Relapse? It's important to also understand that while there is a standard of care for relapse in multiple myeloma, the renowned experts with whom we’ve collaborated in this section point out that their colleagues may often have a different opinion about the right treatment course for a specific patient. Certainly the risk classification assigned to your myeloma is a major driver of treatments, but there are nuances, and choosing the combination of medications which are right for you is something of an art. What’s very encouraging is that there continue to be new options, and therapies considered novel a few years ago are very quickly gaining traction. These can include immunotherapies such as CAR-T cells and a growing number of drug combinations. The myeloma specialists call them triplets, and there are even quadruplets composed of four drugs. There are also a huge number of clinical trials being conducted for multiple myeloma. SurvivorNet has extensive resources about how to access these options as well. At every stage of cancer, it is critically important to be your own advocate. For relapsed multiple myeloma it can be very challenging to discover the option that is right for you. Academic centers and large comprehensive cancer centers are places that most often have access to the latest treatments and research and its often possible to get a second opinion at one of these centers.

Questions for Your Doctor

If you are facing a multiple myeloma diagnosis, here are some questions to help you begin the conversation with your doctor:

• What stage is my multiple myeloma?
• What are my treatment options?
• Am I a good candidate for Revlimid?
• What are the possible side effects of your recommended treatment?
• Who will be part of my healthcare team, and what does each member do?
• Can you refer me to a social worker or psychologist who can help me cope with my diagnosis?

Contributing: SurvivorNet Staff