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Our last newsletter ended with A/C chemo 4, continued dizziness issues. Chemo 4 brought a horrible week of intense nausea, and further dizziness and headaches. L-A even went off coffee, since it tasted very bitter, and also spices were an issue. Thankfully, these symptoms wore off as time went on. We had enough ondansetron to alleviate the nausea. L-A was told by her nurse that she will continue to feel some side effects of the ‘red chemo’ while she is on the new chemo, Taxol.
Managing teaching while fighting cancer: Our Worcester Primary kids are amazing with L-A. We finished up the term with the good news that we will continue to see them for their first term in Grade two. We got a huge cheer for that, as well as for the news that the cancer tumour has shrunk. The teachers must have organized some kind of blessing for us, because before Tony got to the science portion, one of the teachers gave us a huge card, R1000 towards cancer treatments, and enough groceries to fill our freezer and larder (including Christmas treats like mince pies and cookies for Tony). Apparently L-A’s story has not only touched the kids and the teachers, but the parents’ hearts were touched as well. The MasterPeace Academy art classes are done for L-A, since she gave notice that she will not return the following term. Occasional workshops may be fine though for various ministries including MPA. Here is a photo of the group painting that the Worcester Primary School grade ones did with L-A.
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The process of the Ottawa surgeon: L-A asked Dr. Hanlie du Toit to keep Dennis Pitt up to date. He will probably get the update after the new rounds of chemo are done in February.
Losing Hair: L-A was informed that Taxol is more intense on hair loss than the A/C chemo was – this may include body hair, the rest of the eyebrows, the left-over peach fuzz on L-A’s head and perhaps her eyelashes.
Port surgery site healing: The port is fully healed now, and Nurse Marianna had no problems inserting the IV this time around (on December 2nd).
Blood Work pre Taxol chemo 1-3: Hanlie reported no problems with L-A’s bloodwork. Everything was text book smooth.
New Cancer Drugs added to the Regime: L-A has started (as of December 2nd), a new chemo regime of 12 weekly cycles with Taxol, with Herceptin shots every three weeks. The Namibia trip was viewed a challenge since we would miss two cycles, but L-A was allowed a triple dose of Taxol, along with neulastin (to boost white blood cells) and Herceptin. Herceptin is an estrogen blocker that works well with HER+ inflammatory tumours. It’s expensive at $840 Cdn per injection. The oncology pharmacist told L-A that the SA manufacter, Roche recently dropped the price in November. Can you imagine how expensive it was before November?
Hanlie du Toit wants L-A to try the brand new Perjeta as a companion drug to Herceptin. It is a wonder drug that together with Herceptin, they cover and block all HER+ cancer cells from reproducing. However, Perjeta is R81,500 for a full dose (currently $7,539 Cdn). We would take one full dose Dec 23, then three half doses. It would cost over $18,000 for the four doses. That first dose costs more than our used 2004 Mercedes did when we bought it two years ago (which was R80,000 but the rand was higher then). L-A emailed the pharmacist that we cannot afford Perjeta, unless we get help from the manufacturer.
Meanwhile, L-A found a foundation in the US who helps give plans to uninsured cancer patients, and we called them for advice. Roche is the SA manufacturer in Cape Town, and they are under GenenTech, which has a patient foundation. (Roche also manufactures in Canada and has patient programmes). We tried to reach out to Roche and see if they can help, although they haven’t been answering their phones.
Consequences of the FALL – October 15th and beyond: We found a walker for free! L-A asked the leader of our church cell group for advice on who to ask for either a loan or a rental walker. DisChem pharmacy sells them but no one rents here in Worcester. She did offer a name to call, of a couple who run a home care ministry. They live just outside our retirement village. They were very happy to lend us a walker for as long as we need it (until we move). Great news! L-A has become used to it for mobility (although it doesn’t help for carrying things, so her backpack is in use).
Feet swelling and other neuropathy/edema issues: L-A has been advised that these issues may come up again. She is not to walk around with bare feet, otherwise they will swell up. We brough the ice packs with us on our Namibia trip and placed them in the freezer – for use in a cooler and later on our stops. So far we haven’t needed them.
New chemo symptoms: Taxol is more aggressive in hair loss, but the symptom that hit L-A more is bone pain in the joints, knees, fingers and toes. We’ll gone on fizzy Panado (Tylenol) to help. The bone pain was more of an issue during the first few days, and gradually it wore off. It may be different when L-A takes Taxol chemo weekly rather than every three weeks. Nausea is still an issue, but not like it was with the other chemo blend.
Drawing in the chemo room: L-A enjoyed another drawing as she was with her last chemo buddy, Janey. This drawing was simpler with hearts coming through the windows in the chemo room. Tony may re-join on the 23rd December chemo. Meanwhile, L-A finished the line version of the drawing of nurse Marianna as an angel, giving a cancer warrior a new heart.
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L-A has also managed chemo and cancer symptoms well on our Namibia journey. While the walker didn't work for walking into Deadvlei, it was portable enough to go on game and dune drives. We've managed. And L-A found her classic Argentina safari hat to keep the sun off her face.
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We are thankful for:
-That Taxol is kinder than A/C chemo on side-effects so far (although some other cancer warriors report bone and muscle pain, and peripheral neuropathy). Each patient is different, although L-A has experienced all of these shortly after the first treatment (however that was three week's worth of Taxol along with other injections).
- Continued shrinkage of the tumour, so other treatments are being used to target the tumour differently. The A/C chemo is not meant to be used for too long, because it is so strong.
-Blood work where L-A’s white and red blood cells, as well as platelets are very good. There is no issue of anemia, although she takes iron and B-12 faithfully.
-The added pleasure and opportunity of drawing in the chemo room
-An alternative way to get to weekly chemo treatments - a free DisChem bus, which L-A and Janey used on December 2nd.
- Two places to stay upon our arrival in Ottawa.
-A pre-Christmas road trip to Namibia (sunshine is an issue with Taxol, but L-A is using an umbrella, a safari hat and sunscreen). We recharged with no access to wifi for about three days.
-Wonderful doctors, nurses and supportive people in SA. This includes the girls, Janey, and others at our church. There are also supportive people all over the world through our Iris, Harvest Family Network, Alpha, Cursillo, St. Paul’s, Kingdom Culture, BHCC, Eternal Hope, and other connections all over. And our own families too!
-For all those who have contributed to the medical campaign through our Canadian bank account (email transfers to tonycopple@gmail.com), South African bank account (EFT transfers for South Africans), and Tony’s Paypal account. (We still are over $2,000 Cdn short at the moment, but trust this will soon change with a re-boot of the medical campaign) The last round of chemo was expensive due to the Herceptin injection. L-A will receive Herceptin every three weeks.
-For local family in Toronto, caring for parents. While they are worried about me, we am concerned for their welfare. L-A’s mother Carol is in St Joseph’s hospital in Toronto: for various tests to determine her weakness, behaviour, constant coughing and more. L-A’s dad just isn’t able to cope and needs help.
-That we have not had to cash in our retirement investments for medical treatments, or gone over our line of credit limit (it was very close this month)!
-We will have a one-week stop-over in the UK to visit with Tony’s sisters (while flying to Canada).
Incurred Costs (to date as of December 14, 2019)
We won’t bore you with all the details, other than the amount, but we can say that we are being very careful, since we didn’t expect the Herceptin injections, let alone Perjeta.
We raised $16,300. We have spent $$18,456.
We still have nine more Taxol chemo sessions, nine more blood draws, 9 oncologist sessions, lots of prescriptions and supplements. We may discontinue CBD oil, due to the cost. It helps L-A with pain and sleeping even better than oxynorm.
We hope this answers any questions you may have, although it doesn’t go into detail of navigating through pain, side-effects, and mobility issues due to dizziness/neuropathy.
Thanks for your perseverance in reading this email! Thank you for your prayers, love, encouragement and for some of you, financial support to our crowd-funding. We are working on batting down the incurred costs and what’s to come (re-patriation is another story, but we have paid for our airline tickets home). We can see the pieces begin to fit together loosely and see God’s hand in it. We are thankful.
Love, Laurie-Ann and Tony Copple
http://www.coppleswesterncape.ca/medicalcampaign
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