Today I am reaching out to all women who have just been informed that their cancer is back...and in particular - to my sister-in-law's friend who was told this week of her recurrence. I've been there - several times - and am acutely aware of the shock and devastation associated with realizing that you're not one of the small percentage who make it all the way through - a.k.a. cured.
I can distinctly remember my first recurrence - being in the ER when a doctor, who I'd never seen before, handed me my CT scan report. I had been experiencing extreme pain in my right side and told my husband that there were three doors (like in the game show) - behind Door Number 1 was appendicitis; behind Door Number 2 were kidney stones; and behind Door Number 3...I couldn't say it out loud. I read the report and knowing what I was about to go through, glibly told the doctor that I needed a new hairdo for the summer anyways. False bravado. I cried all the way home and kept apologizing to my husband for being a mere mortal.
I can safely guess that you're also looking at the survival statistics and trying to come to terms with what you read. Well, forget all of that. For a great many of us, ovarian cancer is like a chronic disease - when it pops its head up you treat it. If you've had a remission longer than six months from your original chemo, you're considered to be "platinum sensitive". Nice term, isn't it? "Platinum" refers to one of the two drugs standardly given in first-line therapy and the term "sensitive" simply means that it worked for a specific period of time. In this case, your doctor will usually offer the same chemotherapy drugs again. As long as it keeps working and produces remissions longer than six months - they'll keep using it.
Upon recurrence, a patient's care usually moves from her gyn/onc surgeon to a medical oncologist - the oh-so-brilliant doctor who I refer to as my chemo-sabe (kimosabe = trusted scout/faithful friend). Your medical oncologist is the boss of all things chemo. He's your new quarterback. My own medical oncologist told me at my first visit that "his job was to keep me alive until technology catches up". How do you like that? I loved it! He is a trusted scout in that he keeps himself up-to-date with the latest treatments/trials and uses his best judgement to guide me. He surprised me and a number of my family members by showing up when I was in the hospital recently and embraced me in total sympathy and compassion in front of all of them. Calling him a faithful friend is an extreme understatement.
So dear ladies, it's back to chemo. You know the drill. You'll know generally what to expect in terms of side-effects. With fear of the unknown aside, you will have new found confidence and courage that wasn't there the first time around.
Perhaps in the meanwhile, you've done things to improve your overall health - you've begun yoga classes or you've changed your dietary habits - if you haven't - start now. Perhaps you've slipped back into toxic relationships that have done you harm in the past. This life isn't a dress rehearsal - decide now to get help. Do a life's inventory - throw out anything that is a drag to your body, mind or spirit.
Recurrence is all about second chances. Sure, you've been thrown a curve but you've also been thrown a lifeline. As a very dear friend of mine constantly reminds me "It's only a bump in the road".
29 May 2011
20 May 2011
ASCO 2011
Many of you may not be aware of ASCO - the American Society of Clinical Oncology. It is the pre-eminent organization of clinical oncology specialists in United States with 30,000 plus members worldwide and includes all branches and sub-branches of oncology. ASCO meets once a year and the meeting - held in Chicago June 3-7, 2011 - is widely anticipated by one and all.
The theme this year is Patients, Pathways and Progress. It is THE forum for the release of clinical trial results, presentation of breaking developments and information exchange. Most major drug companies schedule their announcements around this meeting. Many, many submissions are made for presentations - only the most newsworthy are chosen.
"Teaser" headlines have been in the press for weeks concerning a drug currently in Phase II ovarian cancer clinical trials called Olaparib. The drug is a so-called PARP inhibitor. A PARP is an enzyme which repairs DNA damage and scientists now believe that it works the same in ovarian cancer cells. The PARP enzyme restores cancer cells - after damage by chemotherapy - to their original menacing state. A PARP inhibitor therefore, would prevent the damaged cancer cell from repairing itself. This study drug has shown great promise in that it impairs tumour growth but doesn't affect normal healthy cells - greatly reducing toxic side-effects. This drug, if successful, is not a cure but a major roadblock for ovarian cancer cell proliferation.
I am very interested in the Phase II trial results which will be presented in June at ASCO. My medical oncologist has followed this drug's trials to date and has suggested that I could possibly benefit from participation in Phase III of which he has a patient allocation. He will attend ASCO and I will anxiously await his feedback.
The theme this year is Patients, Pathways and Progress. It is THE forum for the release of clinical trial results, presentation of breaking developments and information exchange. Most major drug companies schedule their announcements around this meeting. Many, many submissions are made for presentations - only the most newsworthy are chosen.
"Teaser" headlines have been in the press for weeks concerning a drug currently in Phase II ovarian cancer clinical trials called Olaparib. The drug is a so-called PARP inhibitor. A PARP is an enzyme which repairs DNA damage and scientists now believe that it works the same in ovarian cancer cells. The PARP enzyme restores cancer cells - after damage by chemotherapy - to their original menacing state. A PARP inhibitor therefore, would prevent the damaged cancer cell from repairing itself. This study drug has shown great promise in that it impairs tumour growth but doesn't affect normal healthy cells - greatly reducing toxic side-effects. This drug, if successful, is not a cure but a major roadblock for ovarian cancer cell proliferation.
I am very interested in the Phase II trial results which will be presented in June at ASCO. My medical oncologist has followed this drug's trials to date and has suggested that I could possibly benefit from participation in Phase III of which he has a patient allocation. He will attend ASCO and I will anxiously await his feedback.
18 May 2011
6 Impossible Things...
In the words of Alice Kingsley (Alice in Wonderland): "Sometimes I believe in as many as six impossible things before breakfast."
- "There are drinks that make you shrink." Red wine. As one of my sisters said - it makes you lean - lean against the wall, lean against the nearest person to you...
- "There are foods that make you grow." Chocolate.
- "Animals can talk." My 11 week old King Charles spaniel can make his intentions perfectly clear after only being here for 1 week.
- "Cats can disappear." My husband has been gone for a week.
- "There is a place called Underland." I think they're talking about Australia.
- "I can slay the Jabberwocky." Three whole days have gone by and I haven't thought about having cancer.
12 May 2011
Chemo Plus 7
I'm back! I apologise for the delay in reporting on my chemo but I've been busy experiencing all the colours of the rainbow. Well, not really all of them - just mostly my favourite - green. The now-famous words of my last blog that "ondansetron works very well for me" came back to roost with a vengeance. For a period of four days, I thought I was in a clinical trial where I knew, I was given the placebo!
Oh well, that was then and this is now. Back on course - I've just finished juicing wheatgrass, brussel sprouts, kale, apple, carrots, beets - what - now you're turning green?! Sorry, but it is seriously good for you.
At the same time, I've been occupied with a brand new experience - "acu-puncture". I've been involuntarily given "acu-puncture" on my hands, ears, toes, ankles, elbows, end of my nose, hair, and anywhere else that a 10 week old puppy with tiny pin-like teeth can bite. "Acu" indeed in that he never misses an opportunity to accurately nail some body part if it's near. I'm thinking (always positively) that in this case, I can potentially benefit from the "placebo effect"!
All kidding aside, the nausea was bad enough to require an IV anti-emetic administered by home nursing. Thank heavens that option was available because I truly didn't want to see the inside of a hospital again so soon. That being said, let me remind you of a few real post-chemo emergencies:
First and most importantly - a fever (see Blood Disorders) - anything over 38C or 100.5F
Second - any sustained or worsening pain
Third - any allergic reactions within 24 hours of your infusion
Fourth - more than 48 hours of constipation/diarrhea/vomiting or other unexplained bowel/abdominal problems
Certain of the foregoing can form the basis of life-threatening issues and must be dealt with urgently.
Finally, many, many thanks to the family and friends of SunflowerSisters who are running/walking/supporting on Sunday to raise awareness and funds for ovarian cancer research here in London, Ontario. Go team go!!
Oh well, that was then and this is now. Back on course - I've just finished juicing wheatgrass, brussel sprouts, kale, apple, carrots, beets - what - now you're turning green?! Sorry, but it is seriously good for you.
All kidding aside, the nausea was bad enough to require an IV anti-emetic administered by home nursing. Thank heavens that option was available because I truly didn't want to see the inside of a hospital again so soon. That being said, let me remind you of a few real post-chemo emergencies:
First and most importantly - a fever (see Blood Disorders) - anything over 38C or 100.5F
Second - any sustained or worsening pain
Third - any allergic reactions within 24 hours of your infusion
Fourth - more than 48 hours of constipation/diarrhea/vomiting or other unexplained bowel/abdominal problems
Certain of the foregoing can form the basis of life-threatening issues and must be dealt with urgently.
Finally, many, many thanks to the family and friends of SunflowerSisters who are running/walking/supporting on Sunday to raise awareness and funds for ovarian cancer research here in London, Ontario. Go team go!!
5 May 2011
Chemo Day 2 0f 2
It's 4:00am on the morning of my chemo marathon and I'm happily dealing with a side effect - sleeping problems - by blogging. The culprit in this case is a drug which I took last night called dexamethasone - it's a steroid used to augment the "anti-nausea queen" ondansetron - and is also an anti-inflammatory. They both work extremely well in my case.
Yesterday's session had me feeling like a double-ended Popsicle - ice on the hands - stick in the middle - ice on the feet. However, as a result of joking about it with one of my nurses, I learned a new trick. The same theory of reducing the amount of chemo to the peripheries sometimes works in the mouth. So, if you suck on ice chips or a very cold beverage during your infusion - it reduces the flow of chemo to your saliva glands - which, next to your urinary tract, are the favorite places of escape. The drugs seek out all fast reproducing cells so after the cancer itself, the inside passage of your mouth, throat and stomach are key targets. This accounts for patients experiencing mouth sores, taste changes etc.
I had a visit from the Cancer Centre's Clinical Dietitian and she presented me with a newly published patient information pamphlet on the Nutritional Management of Common Food Nutrients. It's a very useful guide - more on this later...thanks Victoria!
I started my day with the chemo enhancing supplement - IP6 & Inositol - and will follow through with a green juice - and then a high protein smoothie. I've packed a picnic of small munchies - power bars, thermos of green tea with ginger, fruit, crackers, and two small sandwiches jammed with goodies including broccoli sprouts which contain 100 times the value of broccoli itself as per Dr. Richard Beliveau. ( Foods That Fight Cancer: Preventing Cancer through Diet )
The "chemo of the day" today is carboplatin - called the workhorse of ovarian cancer treatment. I am carboplatin-sensitive, meaning that it does work for me, but I am also allergic ( see Allergic Reactions) to the drug. As a result, they have developed a special protocol involving interrupting an extremely slow infusion many times with anti-allergy meds. Instead of the infusion taking a couple hours, it requires 7 - 8 hours - and most times (happily) with only minor problems.
A few years ago, gynecological oncology surgeons performing ovarian cancer surgery, started experimenting with a procedure whereby upon completion and before suturing you up, they would flood your abdomen with carboplatin...not just carboplatin - warmed carboplatin. They would rock you side to side to make sure that the drug was fully dispersed and then commence suturing. The theory behind this was to immediately treat any escaped cancer cells as well as discovering that heated chemo was more powerful than cold. This post-surgical procedure became known as "shake and bake". As my initial surgery was performed before the advent of this technique, I took the theory one step further and bring a heating pad with me to carboplatin infusions. I wrap the pad over the IV line entering my arm and can at least accomplish the "baking" part!
Yesterday's high point was not one, but three people Ringing the Bell - please read the section on the website under Hope & Healing. What a joy!
On your mark, get set, I'm off!
Yesterday's session had me feeling like a double-ended Popsicle - ice on the hands - stick in the middle - ice on the feet. However, as a result of joking about it with one of my nurses, I learned a new trick. The same theory of reducing the amount of chemo to the peripheries sometimes works in the mouth. So, if you suck on ice chips or a very cold beverage during your infusion - it reduces the flow of chemo to your saliva glands - which, next to your urinary tract, are the favorite places of escape. The drugs seek out all fast reproducing cells so after the cancer itself, the inside passage of your mouth, throat and stomach are key targets. This accounts for patients experiencing mouth sores, taste changes etc.
I had a visit from the Cancer Centre's Clinical Dietitian and she presented me with a newly published patient information pamphlet on the Nutritional Management of Common Food Nutrients. It's a very useful guide - more on this later...thanks Victoria!
I started my day with the chemo enhancing supplement - IP6 & Inositol - and will follow through with a green juice - and then a high protein smoothie. I've packed a picnic of small munchies - power bars, thermos of green tea with ginger, fruit, crackers, and two small sandwiches jammed with goodies including broccoli sprouts which contain 100 times the value of broccoli itself as per Dr. Richard Beliveau. ( Foods That Fight Cancer: Preventing Cancer through Diet )
The "chemo of the day" today is carboplatin - called the workhorse of ovarian cancer treatment. I am carboplatin-sensitive, meaning that it does work for me, but I am also allergic ( see Allergic Reactions) to the drug. As a result, they have developed a special protocol involving interrupting an extremely slow infusion many times with anti-allergy meds. Instead of the infusion taking a couple hours, it requires 7 - 8 hours - and most times (happily) with only minor problems.
A few years ago, gynecological oncology surgeons performing ovarian cancer surgery, started experimenting with a procedure whereby upon completion and before suturing you up, they would flood your abdomen with carboplatin...not just carboplatin - warmed carboplatin. They would rock you side to side to make sure that the drug was fully dispersed and then commence suturing. The theory behind this was to immediately treat any escaped cancer cells as well as discovering that heated chemo was more powerful than cold. This post-surgical procedure became known as "shake and bake". As my initial surgery was performed before the advent of this technique, I took the theory one step further and bring a heating pad with me to carboplatin infusions. I wrap the pad over the IV line entering my arm and can at least accomplish the "baking" part!
Yesterday's high point was not one, but three people Ringing the Bell - please read the section on the website under Hope & Healing. What a joy!
On your mark, get set, I'm off!
4 May 2011
Chemo Day 1 of 2
It's chemo day - the first of two days of infusions. First up is Caelyx (pegylated liposomal doxorubicin) - a "stealth drug" - it's a slow release product meant to seek, embed and destroy cancer cells over a 28 day period of time. Caelyx carries some potentially nasty side effects including most of the topics covered on the SunflowerSisters.ca website under Coping with Chemo.
The procedure for the infusion includes an unpleasant technique whereby they wrap your hands and feet in ice-filled mitts and booties. I say unpleasant in that it really causes you to freeze - not only your hands and feet. This is supposedly done to prevent the chemo from being overly active in one's peripheries. One of the common side effects of this chemo is Palmar/Plantar Syndrome - a skin reaction on your hands and feet - blistering, burning, cracking.
Being a chemo-veteran, I'm ready with my armament of side-effect preventions. For the first week following treatment, one is prohibited washing dishes - even with rubber gloves on , doing anything with their hands which could cause abrasion - chopping, gardening, rubbing - same for feet - minimum walking - no socks, no loose fitting shoes/slippers. It may sound like spa-luxury - but you need to elevate your feet - lathered in lotion - for several hours a day; put ice bags around your feet as tolerated; wear spa gloves for retaining hand cream; hold frozen bags as tolerated and drink lots and lots of water, teas and juices.
Lindi Skincare products are the only ones I have been able to find which were specifically developed to soothe and relieve the effects of chemotherapy and radiation. Although pricey, the results were clinically proven in a study conducted at Northwestern University, Feinberg School of Medicine.
This morning I started my day with IP6 & Inositol. It is a chemo-enhancing supplement which must be taken on an empty stomach. You will find that most major hospitals in the USA have given the the thumbs-up to this protocol.
I'm about to prepare my green juice - it will contain wheatgrass, kale, celery, spinach, apple and most importantly a beet to prevent the constipation which accompanies the steroidal meds needed tonight.
My final and most pleasurable prep this morning is the mind-body-spirit work. I will practise yoga and then meditate.
The start of a chemo session is a new beginning - a chance to do it differently - a chance for more understanding - a chance for better awareness and acceptance. One of my favorite quotes is by the Dalai Lama "Pain is inevitable; suffering is not." I offer up my chemo today for all of my sisters who are suffering - may they realise that it's only pain.
The procedure for the infusion includes an unpleasant technique whereby they wrap your hands and feet in ice-filled mitts and booties. I say unpleasant in that it really causes you to freeze - not only your hands and feet. This is supposedly done to prevent the chemo from being overly active in one's peripheries. One of the common side effects of this chemo is Palmar/Plantar Syndrome - a skin reaction on your hands and feet - blistering, burning, cracking.
Being a chemo-veteran, I'm ready with my armament of side-effect preventions. For the first week following treatment, one is prohibited washing dishes - even with rubber gloves on , doing anything with their hands which could cause abrasion - chopping, gardening, rubbing - same for feet - minimum walking - no socks, no loose fitting shoes/slippers. It may sound like spa-luxury - but you need to elevate your feet - lathered in lotion - for several hours a day; put ice bags around your feet as tolerated; wear spa gloves for retaining hand cream; hold frozen bags as tolerated and drink lots and lots of water, teas and juices.
Lindi Skincare products are the only ones I have been able to find which were specifically developed to soothe and relieve the effects of chemotherapy and radiation. Although pricey, the results were clinically proven in a study conducted at Northwestern University, Feinberg School of Medicine.
This morning I started my day with IP6 & Inositol. It is a chemo-enhancing supplement which must be taken on an empty stomach. You will find that most major hospitals in the USA have given the the thumbs-up to this protocol.
I'm about to prepare my green juice - it will contain wheatgrass, kale, celery, spinach, apple and most importantly a beet to prevent the constipation which accompanies the steroidal meds needed tonight.
My final and most pleasurable prep this morning is the mind-body-spirit work. I will practise yoga and then meditate.
The start of a chemo session is a new beginning - a chance to do it differently - a chance for more understanding - a chance for better awareness and acceptance. One of my favorite quotes is by the Dalai Lama "Pain is inevitable; suffering is not." I offer up my chemo today for all of my sisters who are suffering - may they realise that it's only pain.
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