RESOURCES & INFORMATION on CHONDROSARCOMA.
[Note: This is a personal health record for my own use. I have been asked to supply details about both diseases especially being rare and occurring simultaneously so this diary will suffice, however please do not share to a third party without permission. Details of dermatomyositis will be compiled and sent as an addendum. This will also serve as feedback on the treatment services and logistics of the hospital which will be found at the conclusion and will be sent under separate cover].
INTRODUCTION
After multiple tests and consultations and biopsies from Aug 6 to Nov 23, I was given a diagnosis and prognosis by Dr. Rod [Wormald?] and team at ENT Outpatients on Nov 30. I have chondrosarcoma on the cartilage below the larynx. He offered two alternative approaches. First an immediate laryngectomy. Second, a wait and see approach to check on growth and metastases followed by possible surgical reduction. I have chosen the latter option. [Details of tests and consultations, with details and dates, can be seen in footnotes].
Research so far has led me to believe this may be hereditary because my mother was diagnosed with a cancer on the hip initially - and this could well have been a chondrosarcoma - which spread to the lungs.
Research too has led me to believe that my condition was always high risk since such cancers are most common when exostoses [unusual bone growth] also exists - and this has been the case in my right ear either at birth or in early childhood which caused regular ear infections throughout life.
Questions not answered by Rod, or not asked, and other matters since realised since the prognosis.....
1. Growth rate: Unable to answer was my question of the difference in size from the CT scan of Oct 18 to the MRI of Nov 20, aprox. 5 weeks.
2. Are there any other pharma or therapeutic treatments that the team researched? [I am quite sure that the Team has not dealt with a patient with my condition before, and that their diagnosis and prognosis derives from research [limited?], since I was not given any details by any oncologist present].
3. What is the 5 years survival rate comparison between alternative suggested treatments, i.e. laryngectomy and surgical reduction?
4. If surgical reduction is being considered and offered in the future, then why not offer it immediately?
5. Is it possible to remove the affected cartilage entirely without a laryngectomy?
6. The speech therapist [Charlotte] wanted a live action X-ray done of my swallowing but nothing was arranged.
7. I am taking Prednisolone for Dermatomyositis [which I had to research and suggest to my G.P.] I have seen articles claiming it reduces cancer. Does the team know anything about this? [I doubt they would as nobody at the hospital seems to know what it is].
Links to medical articles follow.
There may be possible treatments besides the choices given to me by the ENT Team. Links to such treatments which I find will be given following other references.
MY DOCTOR, ROD WORMALD
Links to various articles follow. Some of these are rather technical. These are only examples since anyone is able to do their own search for articles on the subject. I will add to these if article is different and/or significant.
=========================================================================
Definition
Chondrosarcoma is a malignant bone tumor arising from cartilaginous tissue, most frequently occuring at the ends of the femur and tibia, the proximal end of the humerus and the pelvis; and presenting with a palpable mass and progressive pain. Chondrosarcoma is usually slow growing at low histological grades and can be well managed by intralesional curettage or en-block wide resection.
The exact cause of chondrosarcoma is not known. There may be a genetic or chromosomal component that makes certain individuals more open to this type of malignancy. Chondrosarcomas have been observed as a late consequence of radiation therapy for other cancers
.Recurrence augurs a poor prognosis, as conventional chondrosarcomas are both radiation and chemotherapy resistant. Recent discoveries in the biology, genetics, and epigenetics of conventional chondrosarcomas have significantly advanced our understanding of the pathobiology of these tumors and offer insight into potential therapeutic targets.
[Containing some clinical treatment trials]
[Refer esp. to the Research section of this article]
The Google Search Link under the heading of "Is Chondrosarcoma hereditary?"
The Google Search Link under the heading " Survival Rate of Cho. of the throat?"
========================================================================
POSSIBLE TREATMENTS [not suggested by the ENT team] ...........
Alendronate
Survivin
[Watch this space for alternative treatments e.g. Dog worming and Hydrogen Peroxide - although I don't intend to be fanatical about this]
========================================================================
FOOTNOTES & Medical Diary
My voice may have begun to change as much as 2 years ago. I did not want to consult the GP before Christmas 2019 and be incapacitated so decided I would do so in the new year. Early 2020 the Covid scare happened with discouragement to seek medical treatments for elective matters so I put it off. By late July my swallowing became problematic so in early August I attended the GP, Dr, Ali Shah who said he would arrange referral to ENT at Fiona Stanley Hospital. I later discovered they set mid-December for the initial appt. At the GP consultation I also believed I had scratched maybe scabies and contracted an infection. He agreed and I had treatment for scabies and anti-bios for Cellulitis - that treatment continued until Oct 16. On or about Aug 17/18 I had X-Rays and blood tests
On Oct 16 I experienced severe pain which I thought may be an allergic reaction to a change in anti-bios so I called an ambulance. At Emergency Dept a blood test was done and Dr. Fahrina [?] who told me that I did not have Cellulitis but a rare and incurable disease called Dermatomyositis. She gave me a referral for CT scan I was given several tablets which I think were anti-histamines and Ibuprofen. Next day, Sun. Oct 17 on waking up, the pain and itch had decreased by 90% and the rash faded quickly. I decided to leave further treatment unless it flared up again.
I had to attend a follow-up consult at the Acute Medical Ambulatory Clinic for why I called an ambulance [rash & pain], however the doctor started the process to have my throat seen to [and nothing was mentioned about the dermatomyositis]!!
For the Derma, I have been mixing my own concoctions and trying multiple remedies, pills and ointments for 3 months before the pain left on Oct 17. No pain killers worked [but later after surgical biop, I discovered that Tramadol worked], while Tee tree ointment gave a little relief from pain & itch, as did insect surface spray [permethrin]. I currently use Prendisolone ointment [side effects - numb cold toes, mild headache, earache, nausea, indigestion, depression. But increased appetite]. Had 5 day [50mg daily] Prendisolone tabs, Nov 19 -23, and yet to establish a regular regimen.
For the throat, being quite sore [and it may be infected] following the biopsies, am using Tramadol, Codeine, anti-histamines, Ibuprofen, Strepsils, Taking VitD, Iodine, VitC, Zinc, Thiamine. Weight loss - Reg Wt up to 2015 was 94kg, Wt on Aug 6 was 84kg. Wt on Nov 30 was 77kg.
DATES;
Aug 4 Ali first consult. Diagnosed with neoplagia and disphagia.
Aug 10 Ali, Circulation test, Results - low Vit D, High cholesterol, XRay showed lesion & COPD
Aug 17 Dr Win repeat. Suggested Zinc oxide & bandage - didn't work.
Sep 4 Ali, change anti-bio
Sep - Oct Ali repeats
Oct 16 Ambulance, Dr Fahrina re-diagnosed Drmatomyositis, Referred for CT scan
Oct 18 CT scan,
Oct 19 Dr Win, results -cyst on kidney, lung lesion, gall stones, tumour scotum? Referred to ENT for throat biopsy. Stopped anti-bios.
Oct 20 Radiologist rang to say Win cancelled biopsy - will do at FSH
Oct 24 Sharon from FSH rang with appt at AMAC Mo
Oct 26 AMAC appt triage, will arrange ENT consult asap
Oct 30 received bill from St John's - filled out exemption
Nov 5 Pre-admission clinic, saw Nurse, ECG, Parmacist, Anaesthetist., Ultra sound, Mouth X-ray
Nov 6 PET scan, Rockingham
Nov 9 ENT outpatients, Dr. Kate - tried to pass off as a consult but should have been cancelled
Nov 12 Surgical biopsy, Dr Sarah, waited from 6.15am to 1.30 op. stayed overnight
Nov 14 Catherine rang to cancel Mon 16 appoint.
Nov 15 Sunday, Dr Sarah rang -will organise needle biop
Nov 16 Appoint by SMS for Wed 18 US & needle biop
Nov 16 Sandy rang to attend MDT meeting Mon 23. I received results from Qscan PET
Nov 18 USound and needle biop
Nov 19 Dr Ali finally to establish treatment for rash [now on back & chest] - got prednisolone
Nov 20 9.30 Catherine rang - go now for MRI [10.30 - 2pm]
Nov 23 9.30 MDT team meeting - no result determined but come back today for another surg biop overnight & saw Sarah dietitian & Charlotte speech therapy.
Nov 24 At home got SMS to attend MDT meet Wed Dec 2
Nov 27 Catherine rang, cancel Dec 2, attend Mon 30 for MDT prognosis
Nov 30 Prognosis given. See above.
=======================================================================
PET scan results, provided by Q Scan, Rockingham W.A. LINK ...............
[Log In details: user name: jnamnik. password: Jables46]
===================================================
NUTRITIONAL & ALTERNATIVE
[Same Org. Basis mixture is......
Based on the poor prognosis of chondrosarcoma, we investigated effects
of a phytonutrient mixture (PB) containing quercetin, CruciferexTM, curcumin, resveratrol and green tea extract on several parameters associated with the development of this type of cancer.]
Check other various articles here......
Aspirin ...
and ......
4 drugs, incl wormer .....
https://www.mychemist.com.au/buy/2131/Combantrin-1-with-Mebendazole-Chocolate-Squares-4
------
