What he/she says
Just a step from bone pains to multiple myeloma…
Since 2014, my mother a former teacher , Age 62yr now retired was complaining about several bone pains that she was enduring within that period. Obviously, given that she was 58 years old at that moment, all our thoughts were focussed on what the doctor said: severe osteoarthritis. So she started arthritis treatment, went on some physiotherapist sessions. But over years the pain far from reducing, rather increase. She was not able to walk, she started using a wheelchair, and used to lie down on the bed all the day long. Bone pains were extremely painful. To alleviate the pain, we had recourse to a phytotherapist who concocted some drinks for the purpose. With drinks sometimes the pain reduced sometimes it did not. In march 2017, my mother was complaining about a huge pain in her thighbone, it clashed with the presence of my sister who is a doctor who went back in our country. Together they carried out some deep investigations on that leg, followed by urine and blood tests. There was a polemic between the doctors with the results: some doctors were thinking while looking carefully at the results of the radio about sarcoma and they offer to amputate the broken leg. My sister and another doctor keep going skeptical because they were suspecting something else. Examining carefully a radio shot made two years before, there was a stain on that thighbone already that could have drawn somebody who has only paid an accurate attention to detect early the disease we found out later. They were thinking among other possibilities that this could be multiple myeloma. And further investigations just confirmed what they were just suspecting. Bad plasma cells have already invaded the bone marrow (myeloma), pelvis, sternum and vertebras were also touched except the main organs: liver, heart, lung, stomach and so on. Multiple myeloma was active.
Multiple myeloma or Kahler disease when I first heard these two words it seems very strange and scholar to my ears, to explain it in another way, they used cancer. When you receive news that a closer relative of your own is suffering from cancer, what a shock!!! Both for the patient and the persons surrounding her. My sister tried to explain us what the disease was in reality and the chances of survival that our mother had therefore. At that moment more than 60% of the malignant cells have already invaded the bone marrow.
Next steps to be achieved were to repair the broken thighbone by a surgery, then to start a chemotherapy according to results other investigations (biopsy, urine test to find the monoclonal immunoglobulin a bad protein produced by the malignant cells). Given on one hand that in my country hospitals are not well equipped to perform that kind of treatment, that on second hand, the more we wait, the wors it will be for the progress of the illness, the family decided to send her in Tunisia.
To travel with a broken thighbone was a tough and serious affair! But despite plenty difficulties that arose all of a sudden, everything went well and she arrived in Tunis, with my sister who is a doctor. While being there, the surgeons performed a surgery on the thighbone in order to remove the part that was already damaged by the disease. They made a biopsy that confirmed the previous diagnostic made in my country, with the precision that the myeloma was not a secretory one. Meaning less bad toxins secreted, what a light of hope in the dark!
The surgery went well and we started the chemotherapy one month after ordering medicines from India (good quality and price rate). Three specific medicines involved in the process bortezomib, thalidomid, and dexamethasone with also their cortege of side effects. The chemotherapy lasted for four months. Very difficult moments she lived the day she had the drips, to lessen some side effects we use to put on her head while passing the drip a towel soaked in cold water to prevent hair loss.
While back home she was fighting against nausea with a cup of steaming ginger tea, honey and lemon. My sister had already planned her diet, showing us vegetables, sources of protein, fruits helpful to support the effects of chemotherapy. She was also encouraged to drink a lot of water to drain the toxins. After the third month of chemotherapy some neuropathy started touching the palm of her hands and the soles of her feet. We found out the fact of wearing socks and gloves decreases the prickling feelings so she started wearing both although it never stops until now. She continuous with reeducation sessions with the physiotherapist on the leg on which surgery was made. Family and friends try to surround her with all of our love and affection, we believe that mental strength is very important for recovering from disease that is why we keep thinking and sharing positively with her.
Another important lever to be positive is to pray, until now we keep praying, and all our energy to fight is drawn from there, and we are giving thanks for the little miracles already tangible.
After we finished the chemotherapy, we weren’t able because of previous financial efforts to afford a bone marrow transplant to pursue her treatment as told by the doctor in Tunis. In order to have an idea of how the disease is going on we carried out blood investigations each month to check anaemia, if there is less red cells it could be a sign that the myeloma was turning on. So she ate a lot food with a huge amount of iron green vegetables, dried nuts, beetroots , she continued with her ginger tea that time mixed with curcuma and pepper. She also took pregabaline to deal with her neuropathy, and ostenel to strengthen her bones. Her blood cells stayed in the range of 11 to 12. She spent nine months like that before coming to India to afford the BMT.
After the first investigations made in the hospital in India, the malignant cells regress to less than 5% in her body. Then she was admitted and started an autologous bone marrow transplant. It’s all about collecting stem cells from the patient before another chemotherapy. Then the day after, these stem cells were reinserted through a drip in the body of the patient. The last step was to manage the side effects as for instance to suck ice cubes one hour and
two before the chemotherapy starts. Other side effects are vomiting, loose motions, constipation, nausea, any pain: mouth wound, throat pain. Day to day they are controlled by
injections for vomiting and nausea, loose motions by tablets to reduce them, constipation by syrup to induce motion, we prevent mouth wound by frequent mouth washes, it is also recommended to drink a lot of water three to four liters per day.
A high level of hygiene is also needed, cleaning of room, frequently washing of hands before and after touching the patient, as well as food, sterilization of the cutlery, plates and glasses to avoid the slightest risk of infection. Finally, day to day, in the early morning, blood sample is collected in order to appreciate the increase or the decrease of determined blood cells (leucocytes, platelets, red cells and to implement a solution to fill the gap, to prevent an infection, to fight against one that is already there or on the contrary to support any noted improvement.
Although we are still in the recovery period after the BMT, I am now able to say that this Multiple Myeloma doesn’t sound as scholar as it was in the beginning, that it doesn’t frighten me as much as it was in the beginning even if this disease likes to be disguised: coming in frontline with the shape of bone pains. My mother would probably agree the same fact, because we learn to live with the disease with its side effects, and within all this there has always be a path of hope, light and joy where we walked.
To Dr SK Gupta
“Thank You” will hardly be enough.
Patient & Attendant (From Cameroon)
- Date 18 Sep 2018
- Doctor Name Dr. SK GUPTA
- Category Liquid Organ Cancer Disorders, Liquid Organ Non-Cancer Disorders