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Newly Diagnosed Multiple Myeloma- Neck Plasmacytoma
I presented with an almost identical situation. Single plasmacytoma in C5, (C4 had collapsed on C6) chunk of hip placed as a strut in between C4 and C6, etc.
Hello David- My name is Mary and I’ve just been diagnosed Multiple Myeloma. I am 55 years old and suffered a collapse of the C-7 (plasmacytoma) in my neck. I had emergency surgery Dec. 4, 2015 to reconstruct my neck with a bone from my hip, a metal plate, posts and screws.
I was told that a plasmacytoma tumour was the cause. Apparently the tumour “exploded” with the collapse (not sure what was left of it) and pathology confirms it was a plasmacytoma. I did not need radiation.
I’ve had:
- x-rays,
- skeletal surveys,
- bone marrow and
- an MRI of my spine done.
My bone marrow results show MM. I am told I have lesions on my skull and there are no secondary cancers in my body.
I have not been told what Stage it is as we are waiting for one more result of the bone marrow test. I am seeing the hematologist Thursday and will have results of the MRI. The doctor recommended chemotherapy right away but I have been stalling somehow hoping to recover a little more from surgery and be stronger and healthier..
I have been healthy most of my life. I never take meds, not even for a headache and have never been hospitalized (except to have my 2 children). I take vitamins and try to eat as healthy as possible and do moderate exercise.
I have seen first hand what chemotherapy does to people (my dad had lymphoma) and told myself I would seek alternative medicine if I ever had to. The doctor said I would have 4-6 months of chemotherapy (pills everyday) followed by a bone marrow transplant.
I am hoping there are no lesions on my spine as I figure this will give me more time to educate myself on MM.
Do you think Dr. Burzynski’s protocol would work for me or do you believe it works best in conjunction with medicine? I live in Canada. Do you know of any treatment centres that follow Dr. B’s protocol?
I thank you from my heart. Mary
Hi Mary,
I am sorry to learn of your Multiple Myeloma diagnosis. I have to say that
- you are young as MMers go and
- it sounds as though your MM is early stage.
Both of these are positive factors in your prognosis.
As an aside, I presented with an almost identical situation. Single plasmacytoma in C5, (C4 had collapsed on C6) chunk of hip placed as a strut in between C4 and C6, etc. I also had lesions in my skull.
For the record, my neck was worked perfectly since my operation in ’94. I don’t know if my Dysphagia (difficulty swallowing) as caused by my local radiation or the surgery and the metal that as placed at the site. Dysphagia is a long term side effect that you should consider.
It helps me to think through and address all questions if I reply to you by laying out your/my thoughts.
Your stage at diagnosis will usually dictate how aggressively you choose to treat your MM. When you find out please tell me your stage. My guess is that you are early stage MM and therefore may need low-dose therapy (I know you don’t want any chemo but it is an option) coupled with evidenced-based non-conventional therapies such as intravenous vitamin C, curcumin, nutrition and lifestyle therapies.
“I have not been told what Stage it is as we are waiting for one more result of the bone marrow test.”
I know less about the Canadian standard of care and treatment options but chemo and an autologous stem cell transplant (ASCT) is aggressive therapy for early stage MM.
“The doctor said I would have 4-6 months of chemotherapy (pills everyday) followed by a bone marrow transplant. “
Whether you choose to wait before chemo or choose to treat more aggressively, your physical health directly translates to your long-term prognosis
“I have been healthy most of my life. I never take meds, not even for a headache and have never been hospitalized (except to have my 2 children). I take vitamins and try to eat as healthy as possible and do moderate exercise.”
There are few effective alternative therapies for an aggressive cancer like MM. Again, let’s find out your stage but we should discuss those therapies that are considered
- integrative and
- complementary.
Studies have shown many integrative therapies that both enhance the efficacy of MM chemotherapy as well as reduce the toxicity.
“I have seen first hand what chemotherapy does to people (my dad had lymphoma) and told myself I would seek alternative medicine if I ever had to..”
If you do not have any bone pain currently then there is a good chance that you can in fact learn more about MM and think through your therapy plan.
Lastly The Burzynski Research Institute (BRI) and antineoplaston therapy (ANP). The main challenge with ANP is that the therapy is out of pocket aka you must pay for it yourself.
In order to become a patient at the BRI you must fill out a new patient form and eventually go to the clinic in Houston, Tx.
Further, you should consider taking ANP capsules. This form of ANP is much less expensive than the intravenous version. The oral form of ANP is less of the therapy getting into your blood. The intravenous version of ANP is more effective.
My advice is that we communicate again once you have learned of your stage. That knowledge will help you think through your therapy options.
Do you have any questions?
thanks
David Emerson
- MM Survivor
- MM Coach
- Director PeopleBeatingCancer
Recommended Reading:
- Multiple Myeloma Diagnosis, Smoldering MM or MGUS ?
- Autologous Stem Cell Transplant for Multiple Myeloma- What you Need to Know
- Multiple Myeloma Chemotherapy- When Cancer Treatment Might Kill You
Dysphagia
Dysphagia is difficulty in swallowing.[1][2] Although classified under “symptoms and signs” in ICD-10,[3] in some contexts it is classified as a condition in its own right.[4][5][6]
It may be a sensation that suggests difficulty in the passage of solids or liquids from the mouth to the stomach,[7] a lack of pharyngeal sensation or various other inadequacies of the swallowing mechanism…
Diagnosis and management of solitary plasmacytoma of bone
“Plasma cell neoplasms (plasma cell dyscrasias) are a group of entities characterized by the neoplastic proliferation of a single clone of plasma cells, typically producing a monoclonal immunoglobulin. Plasma cell neoplasms can present as a single lesion (solitary plasmacytoma) or as multiple lesions (multiple myeloma [MM]). Solitary plasmacytomas most frequently occur in bone (plasmacytoma of bone), but can also be found outside bone in soft tissues (extramedullary plasmacytoma) [1-4]. Why some patients develop MM and others plasmacytoma is not understood, but might be related to differences in cellular adhesion molecules or chemokine receptor expression profiles of the malignant plasma cells [5].
Solitary plasmacytoma of bone (SPB, also called osseous plasmacytoma) is a localized tumor in the bone comprised of a single clone of plasma cells in the absence of other features of MM (ie, anemia, hypercalcemia, renal insufficiency, or multiple lytic bone lesions) [6,7]…”