Cancer Warrior: Terry’s Sarcoma War 2023

Click here for Introduction

Clich here for Terry’s Sarcoma War 2022

Click here for January 2023

Click here for News Flash January 2023

Click here for February 2023

Click here for March 2023

Introduction

Terry’s Sarcoma War 2023

First Line Chemotherapy April to August 2022

Doxorubicin (Adriamycin) is an aggressive type of Chemotherapy and it is used for multiple types of cancer such as blood cancers, Lymphoma, Leukemia, various solid cancers such Sarcoma, Breast Cancer and  Ovarian cancer. It works by inhibiting an enzyme known as “topoisomerase 2” and blocking RNA and DNA synthesis, which leads to cancer cell death. This drug is the “A” in Lymphoma treatment A.B.V.D.

Apart from the Chemotherapy drug having a bright red color and causes your urine or other body fluids to turn a reddish color for 1 to 2 days after a dose is given which is how it got its nickname.

Adriamycin has been withdrawn from the market but Doxorubicin has now fully replaced it. Most medical professionals still refer to the drug as Doxorubicin (Adriamycin).

This form of chemotherapy was very successful as it destroyed multi sites but it was not enough to kill the main tumor to Terry’s shoulder

Clinical Trial From October 2022 to date

Following a meeting in Madrid in late September 2022 Terry successfully entered Sacoma Cancer Trials. The treatment included Targeted Radiotherapy and Chemotherapy

Targeted Radiotherapy EBRT involves targeted radiation beams being delivered from outside the body. It is a non-invasive method of delivering radiation to a tumour. The radiation beams are shaped as they come out of the linear accelerator and/or before they reach the patient to make sure that they are carefully directed at the cancer site. Exposure is measured as GMl/Grey. Like chemotherapy this can have various side effects for different patients ranging for minor to serious

Trabectedin 62mg Chemotherapy (Yondelis) Soft tissue sarcomas (STS) are a rare group of malignancies with multiple different subtypes. Close to half of intermediate or high grade STS develop metastatic disease. Treatment of recurrent/metastatic sarcomas is quite challenging with only a few drugs showing measurable benefits. Trabectedin (ecteinascidin 743, ET-743, Yondelis) is a newly developed alkylating agent that has shown significant broad spectrum potential as a single agent second line drug alone or in combination particularly in the treatment of liposarcomas and leiomyosarcomas. Clinical benefit rates seem to favor its use especially in pretreated patients with recurrent/metastatic disease.. Approved in Europe, the currently ongoing Phase III trials are showing a positive response

Trabectedin 62mg Chemotherapy (Yondelis) Soft tissue sarcomas (STS) are a rare group of malignancies with multiple different subtypes. Close to half of intermediate or high grade STS develop metastatic 

Trabectedin is derived from the Caribbean sea squirt Ecteinascidia turbinate . Its main mode of action is as an alkylating agent against deoxyribonucleic acid (DNA). Unlike conventional alkylating agents which bind to the major groove of DNA and predominantly form crosslinks to the Guanine N7 or O6 position, trabectedin predominantly binds to the minor groove of DNA and binds to the Guanine N2 position.Additionally, cells deficient in transcription-coupled nucleotide excision repair, but not mismatch repair, appear much less sensitive to trabectedin than other alkylators.

For the treatment of soft tissue sarcoma, the recommended dose is 1.5 mg/m2 body surface area, administered as an intravenous infusion over 24 hours with a three-week interval between cycles. This treatment is in a level 3 advanced trial and has proven to have a substantial impact on Sarcoma sites when combined with Radiotherapy.

Starting dose Trabectedin 1.5 mg/m2  PLD  30 mg/m2 – 62mg

First reduction Trabectedin  1.25mg/m2 PLD 25 mg/m2 – 52mg

Second reduction Trabectedin 1 mg/m2 PLD 20 mg/m2 – 42mg

We are awaiting confirmation about when each reduction commences but all indications show that Terry is still on the starting dosage

It would appear from the above photo that Terry has had a significant facial improvement from the therapy

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January 2023

Monday 2th of January

Local oncologist meeting in Lanzarote. As Terry was originally treated in the general hospital in Arrecife Lanzarote they do keep an eye on Terry’s progress. It’s good to have a hospital this close that are actively interested in Terry’s progress. The oncologist seemed taken back when he met Terry today. He commented on how well Terry looked and how strong he looked.

After the appointment Terry, Sara and Tyler popped into “Asociación Española Contra el Cáncer”

This centre have been incredibile in supporting Terry whenever he needed advice or assistance. Terry had raised nearly €650 for his birthday for them as they are a voluntary organisation. But Tyler and his class mates had done a door to door Christmas carols singing to raise money for this wonderful charity and  they had about €200.

Tuesday 3rd of January

Early flight to Tenerife for Terry. As always the day commences with a blood test to insure that there are no issues or infections. This blood test is done at 8;30am and followed by a meeting with the lead Oncologist

Blood Test results

A low white blood cell (WBC) count, is one of the side effects of chemotherapy. It can  delay treatment to allow the white blood cell count to recover, and/or cause the care team to reduce the chemotherapy dose to prevent it from happening again. There are several medications, called CSF colony-stimulating factors, which can prevent the white blood cell count from dropping or help it recover faster. These medications are given by self injection. Terry’s test showed a low white blood cell count and the team decided not to commence with Chemotherapy until next week. CSFs include Neupogen (filgrastim), Neulasta (pegfilgrastim), Leukine and Prokine (sargramostim) and basically stimulate the bone marrow to produce massive levels of blood cells.  Terry will self inject from today for 3 days and return next Tuesday for his Chemo.

This is not an unusual occurrence in Chemotherapy as the drugs used can seriously damage the immune system. The production of white blood cells drops as the immune system no longer recognizes infections and can expose the patient to a high risk category for infections. Especially during and the week following Chemotherapy. Most chemotherapy regimes include CSF for the week following therapy but in this clinical trial and the fact that it had not effected Terry in previous cycles they had not included CSF. These are also called G-CSF  especially in blood cancer treatment.

Growth factors are proteins made in the body. Some of them make the bone marrow produce blood cells. G-CSF is a type of growth factor that makes the bone marrow produce more white blood cells so it can reduce the risk of infection after some types of cancer treatment.

G-CSF also makes some stem cells move from the bone marrow into the blood. Stem cells are very early cells that develop into red blood cells, white cells and platelets.

The high dose of chemotherapy stops your bone marrow producing blood cells. So you have the stem cells infused back into your bloodstream. They go into the bone marrow and start making the different types of blood cells again. These are self administered and each syringe is a single use disposable unit.

As Chemotherapy progresses issues like this can occur, especially after the third cycle. This would be Terry’s 4^th cycle and indicates how active the treatment is. Clinical Trials are heavily documented to insure that the patient is not exposed to issues and these trials are an educational process for medical teams, advancement to curing rare Cancer’s like Terry’s lead the way to fine tuning this type of treatment. If Terry’s white cells show further issues going forward the team will most likely commence CSF following each cycle.CSF stimulates the production of stem cells inside the bone marrow, it can cause pain within the bone joints which from my own experience can be unsettling but you do get used to it, best way to describe it would be like the pain from a broken bone during healing except the entire body is included, I found it unsettling but a lot of patients have reported serious levels of pain. Like everything in the battle against Cancer each individual will experience effects in different ways.

This is not an unusual occurrence in Chemotherapy as the drugs used can seriously damage the immune system. The production of white blood cells drops as the immune system no longer recognizes infections and can expose the patient to a high risk category for infections. Especially during and the week following Chemotherapy. Most chemotherapy regimes include CSF for the week following therapy but in this clinical trial and the fact that it had not effected Terry in previous cycles they had not seen any need for CSF. These are also called G-CSF   

So this round of Chemotherapy has been moved to next Tuesday 10^th January pending improved levels of white cell count. Terry was disappointed but fully understands that the team will not take any risks. Terry has gained weight and looks incredible. However these test are preformed for a very good reason and can sometimes be an unexpected curveball during treatment. We are not sure yet if this will delay the next CT Scan which was due on 23^rd but the lead Oncologist will decide that next week.  

Tuesday 10th of January

Early flight to Tenerife for Terry. As always the day commences with a blood test to insure that there are no issues or infections. This blood test is done at 8;30am and followed by a meeting with the lead Oncologist

Blood Test results: 

All good and white cells are normal

4^th Round of  24 hour Chemotherapy begins. The side effects of the Chemo seem to have reduced since the previous round but all going well. Terry returned to the hotel to relax.

As a comparative difference, during the initial radiotherapy and 1^st round of chemotherapy Terry was unable to keep food down for nearly 4 weeks, he had lost a substantial amount of weight. However Terry has regained nearly 7kgs in body weight, so he popped out to have lunch at about 1pm followed by dinner that afternoon.

Terry returned to the hospital and had the pump removed on Wednesday after breakfast .

Oncologist Meeting 10th of January

Terry had to wait as normal for the oncologist. The oncologist was very impressed with how well Terry looked, the increase in weight and how well balanced his blood appears. “Keep doing what you’r doing” – She decided to continue the G-CSF injections for 7 days following treatment. This is all part of cancer trials, these incredible medical professionals learn how to handle different effects, through this learning they not only help Terry but others preparing to undergo this type of treatment. Years of research, funding, dedication & tears go into clinical trials but it is why we honour the fallen and embrace the survivors. What this team are achieving with our Terry will lead to helping so many other victims over the coming years.

 31^st of January 2023

Terry had a full NTAP-CT Scan last week and today he had to return to Tenerife to have his 5^th cycle of chemotherapy but as usual it started with a blood test followed by a meeting with the Oncologist.

Blood test were good and Terry got the go for round 5

“28th March 2022 I was painting the ceiling of the house I just purchased in Kerry and my mobile rang. It was via Messenger and the caller ID was Terry. I had gloves on and couldn’t answer. So a few moments later I called back. Terry had been diagnosed with Inoperable Stage 4 MPNST Sarcoma. The initial prognosis was 3 months to live.

Almost 11 months later I was yet again painting in the house, this time the kitchen. 11 months of incredible battling. But the news was unreal. This time I answered straight away

Oncologist meeting 31st January 2023

Its now 3 months since clinical trials with Terry commenced. Almost 4 weeks of intense Radiotherapy along with Chemotherapy, a difficult 6 weeks for Terry but he adjusted to Chemotherapy which was having less side effects than Red Devil. 3 months and Terry looks fantastic. The oncologist was yet again pleasantly surprised at how well Terry looked, he had gained more weight and is stable at 85 kgs – a true fighting weight for his build.

The scan has shown a reduction …… Originally 90mm x 85mm it is now at 83mm x 55mm

90mm x 85mm is a mass of 7,650

83mm x 55mm is a mass of 4,565

That is a mass difference of 3,085 it equates to a 40%

4 cycles and a 40% reduction is something of a miracle

Terry will have another 2 cycles and his next scan will be on the 13^th of March 2023

They are now planning to increase the level of Chemotherapy as Terry has gained weight. Even more juice to kill this tumor

I am emotional overpowered by this, it is far beyond expectations by anyone and everyone involved it this man’s incredible approach. Terry’s positive attitude, relentless battling and a first class medical team have given Terry an incredible quality of life, which is difficult during extreme trials.

Measuring tumors like this one has difficulty and depends on various aspects during the scan, however this is a significant result. Yet another battle win for Terry and his family.

This is just a rough Estimate of the reduction

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February 2023

22nd of February 2023

Lanzarote Carnival, a popular tradition. Traditionally, forty days before Christian Lent, the carnival takes place all over the island. 10 days of costumes, parades and parties in the street.

The “Burial of the Sardine” ( Entierro de la Sardina) is a Spanish ceremony celebrating the end of carnival and other festivities. The “Burials” generally consist of a carnival parade that parodies a funeral procession and culminates with the burning of a symbolic figure, usually a representation of a sardine.

Terry’s start date was a day late as the Canary Islands are on bank holidays this week. Spain is a deeply religious country and festive celebrations are a way of life. The festive carnivals are exhilarating and I have lovely memories of the many events I had attended over the years.   

Terry’s blood test are good, with a slight increase in blood sugar levels, this can happen during chemotherapy as steroids are used which can play havoc with blood sugar levels, but not a major concern. Terry has gained more weight and as he is handling this treatment well, a decision was made to increase the level of chemotherapy

The original day one level Trabectadina over 24 hours was set at 62ml. Due to weight loss this was adjusted down to 56ml. With Terry gaining weight the decision to increase this up to 60ml was made.

This increase is also significant in the current battle, the Oncologist has confidence that since the last scan showed a substantial reduction in the mass of the tumour it is clear that the chemotherapy is working and the tumour site is responsive to this, the increase will add greater power behind Trabectadina to suppress the site further

Most people consider that it is harder to loose weight than can weight but for Cancer patients it is the opposite. Using fillers to gain weight during treatment is vital. The negative side of this can be an increase in blood sugar levels

The oncologist has also decided to change the scan date to 14^th March. This again is a great signal from the team as they want to see how responsive the new levels of Chemotherapy are dealing with the tumour site.

Way back in 2001 I had the pleasure of meeting Gallie, Gallie was a very talented musician who preformed in our bar, Nancy Spains. Like the majority of musicians that worked with us we have kept in contact over the years. Gallie moved to Australia with his stunning wife Kellie (Kellie also worked in Nancy Spains) and they have a beautiful family. Gallie has recently returned from recording a new album in Nashville and I look forward to that release. Gallie is also a very talented artist. Terry has kept in close contact with Gallie over the years. Last week Gallie’s sister Louise and her husband Tammy visited Terry in Lanzarote. Some fantastic friendships were forged on the island.

This song was preformed by Gallie and its quiet significant for people who have/are battling cancer. We can be surrounded and loved by so many but late at night we can drift into a very dark and lonesome place to battle cancer. Its not negativity but a powerful tunnel vision on beating cancer. I still get this feeling after a 9 year battle, even after my 5 year all clear. It is difficult to explain but I am sure that people in our position will understand the significant meaning of this beautiful song and the incredible person singing it

Thank you Gallie and apologies again that I forgot the time difference… best wishes to you, Kellie and the family.

March 2023

Tuesday 14th of March 2023

Blood test are good and a slight weight gain to 87.5kgs so “Fat Andy” is back..

Terry has his 24 hour Chemotherapy pump linked in and meets the Oncologist all at this point is exceptional and going well ahead of schedule.

The oncology team are keeping a very close watch on how reactive the tumor site is to the increased level of chemotherapy and Terry is booked in for a NTAP-CT scan at 5:30

Wednesday 15th of March 2023

Terry returns to have the 24 hour pump removed and the oncologist left a message that she wanted to see Terry before he was discharged.

They had the initial Scan results from yesterday

The scan has shown a reduction ……

Originally 90mm x 85mm  – 90mm x 85mm is a mass of 7,650

NTAP CT Scan 31/01/23 – 83mm x 55mm is a mass of 4,565

That is a mass difference of –3,085 it equates to a 40% reduction

NTAP CT Scan 14/03/23 – 44mm x 78mm is a mass of 3,432

This is now a mass difference of  -4218 it equates to a 54% reduction

This is a very significant reduction and is a clear sign that Terry’s battle is winning.

Basically it has reduced from the size of a large egg down to the size of a large grape …..

These scan are a guideline and only used to allow the team estimate how reactive cancer cells are to the chemotherapy. The scan is a positive indicator as to the how this tumor is been destroyed. On occasions the scans can show other issues, but clarification is always required to confirm is any issues are happening. Terry will have an MRI in the next few days to double check and questionable findings. However the current results are incredible and the oncologist will be doing more CT Scans prior to the next chemotherapy which will be on the 4^th of April   

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