Postponed chemo

Tuesday morning 6:00 am, Marie-Josée and I are en route for the hospital. As you know I must start my treatments by 7:30 am no later. Our eldest son is the babysitter for this morning. He is a certified babysitter now, with his two day seminar on babysitting and CPR.
I get into the hospital while my wife returns home to prepare lunches and snacks for the children and send them off to school. The third floor ward in oncology opens at 7:30 so I have time to go have breakfast at the hospital cafeteria.

7:30 am the first nurse shows up. She seems a bit surprise to see me there but since she knows how long my treatment is she tells me to go sit in one of the treatment rooms so she can set up my port-O-cath. When she comes in the room she asks me if the coordinating nurse left me a message. I say no. She them tells me that my neutrophils count (white blood cells) is too low so they won’t give me my chemo today. It is delayed for a week. To be sure, I wait for G, the scheduling nurse, to arrive. Upon her arrival she confirms that she left a message yesterday around 3:30 pm to say that upon consulting with Dr L., she rescheduled me for next week.

Conclusion my wife and I woke up early and travelled to the hospital for nothing.

I call MJ who has to get in traffic again to come and get me. It was a rock'n'roll morning for her. Plus it’s my fault because I did not get my Neupogen injection which serves to boost the number of white blood cells. I told my wife that I felt in top shape and thought that I did not need the injections…I was wrong.
You can be sure that this weekend MJ will inject me a couple of times with Neupogen so that next week I will have enough WBC to receive my chemo.

Clinical trials

 

I think you have waited enough with my message on Facebook. I apologize.

Here's the situation.
In my last appointment with Dr L he told me about a research protocol in the United States. A former colleague of his left for Bethesda, Maryland at the National Cancer Institute (NCI), part of the National Health Institute (NIH) for a fellowship in surgical oncology. This colleague presented a protocol that is in the field of immunotherapy and Dr. L thought of me as soon as he heard the details of the study. I seemed to be the ideal candidate.

The protocol
In summary, the research is as follows:

They remove a tumour (surgery) and in laboratory they extract TIL cells (tumor infiltrating lymphocytes). Lymphocytes are a type of killer white blood cells. Those sought have successfully penetrated the tumour therefore have good potential to kill the it. If it did not happen yet, a theory is that perhaps they were not numerous enough. The researchers then multiply in test tubes (in vitro or ex vivo) the TIL that were extracted. they then enrich the multiplied TILs with another kind of cell called CD8+, another specialized cell killer. A kind of "Marines" lymphocytes.
This enriched cocktail is given back to the patient after having weakened his immune system to receive the autologous transplant. After that the cells "boosted" are supposed to re-enter tumours and do their job until the end.

It is a treatment that has been tested in other cancers such as melanoma, with enough success so that now researchers are trying it in other cancers such as colon cancer.
Our excitement was very high, particularly in our conversation with Dr. L where he said that this protocol was a potential cure. Word he never mentioned when talking about chemo.

Conclusion
We submitted all the necessary elements to Dr. Turcotte in the United States. After a week of waiting, I received the following message from him:
I received:
- Pathology reports of HSC and HND,
- A CT report dated 13/04/2010 which raised the possibility of recurrence in the left hypochondrium
- A PET-CT report of 06/08/2010 that supports the idea that the abnormality in the left hypochondrium could be a recurrence.

There is no evidence in these reports of liver metastases, pulmonary, peritoneal, good size tumour (at least 3 cubic centimeter) that we could resect to produce cells that serve in your treatment.
There is also no measurable lesions frankly (at least 1 cm) that could serve as a witness to the effectiveness of our treatment.
These data do not qualify you for our study, they suggest, and that's good news, if there is a recurrence, the therapy used presently seems to control the spread and progression of your cancer.

So you read the same thing as me. I'm not accepted in the study because my illness is actually too small right now. In a sense this is extremely positive as it reaffirms that I have no damage to the liver, lung or peritoneal lining big enough to meet the requirements of the study.
At the same time I have some disappointment because I already saw this treatment as a cure BUT I must continue the chemo for now.
My focus now is on achieving the same result as the protocol but without it. Maybe I can boost my TILs myself.

Keep going

That’s what we are doing. Last week was my third FOLFOX chemo treatment with the new prolonged protocol.  This time though we added an infusion of calcium-magnesium, an extra hour. My case puts a lot of pressure on the medical personnel, nurses and pharmacists, because timing is very tight. In order to have my treatment fit within the day I need to be “plugged” no later than 7:30 am so to finish around 5:00 pm. Since the first shift of nurses in the oncology clinic starts at 7:30, you can imagine the type of rush that M. Raymond creates. I am starting to be known around the department for not quite the reasons I wish for.

The calcium-magnesium infusion is supposed to help with the neuropathy caused by Oxaliplatin. Neuropathy=finger tingling and throat that stings when exposed to cold (sometimes without the cold also). For now it is not that bad but I need to adjust like when I go to the hockey or figure skating practice. I wear gloves and it helps a bit. The effect is worst when I take something in my hands, when there is pressure on my skin. But again it is not all the time for now. It may become permanent later on, we’ll see. 

I want to tell you about our last appointment with Dr L my haematologist but in order for you to understand the whole story I need to update you on my situation. I have not done that yet because I wanted to spare my children and I think that my eldest son reads my blog from time to time.

My last scan showed a small progression.Two new small tumours appeared, there 1 cm long (half an inch) and the tumour that was stable at 1 cm since January is now 2 cm (close to an inch). It’s not big but the progression triggered my haematologist to change protocol. Since there is no more choices for me we had to revert to the first cocktail that was used, FOLFOX, to which I had had a bad reaction in 2009 (drop in blood pressure, sweating etc.). In order to be able to try this again we needed to use a modified protocol on administration. Where it used to be infused in 2 hours is now 8 hours. Very diluted solutions at first with slow increase through the 8 hours. I also take anti allergic medication the two days prior to the chemo. The other effect of the progression is the cessation of Avastin (Bevacizumab). This product is one of the most recent discoveries of cancer research (about 10 years ago). It has to be given at the same time as FOLFOX (or FOLFIRI) and it increases progression free survival or straight survival time. But since there was progression while using Avastin, government says no more Avastin (it stops paying for it). But there are some data that suggests that Avastin should be continued because there seemed to be a benefit. Unfortunately these studies are open label and not randomised so the government do not consider them. As you may remember, Avastin in my case cost $2000 each dose to repeat every two weeks.

We discussed this situation with Dr L and MJ wants me to have Avastin. We both believe this product was fundamental in the great response I had in 2008 where my tumours shranked enough to open up the possibility of surgery. Dr L mentioned that it was possible to get Avastin in a private clinic if we had insurance. So MJ started working on it with Manon, her benefits manager, and with the extraordinary collaboration of the people from the insurance broker and support from her boss. They were successful in getting Avastin reimbursed for 6 months. I take this opportunity to thank everyone that work and make decisions that directly impact my life.

Back to the appointment

When we arrived in his office Dr L was anxious to hear from my wife if she was successful in getting the reimbursement. He sat back in his chair with his arms behind his head as if to say “so how did you do it”. MJ explained that she worked hard for two weeks and that she got Roche, Avastin’s manufacturer, involved. When she finished relating the details Dr L had a big smile on his face and said ”you’re very efficient, sometimes I wish you were on my team”. He added that he was not really surprised because he had come to know my wife in the last two years. He has witnessed her drive on a few occasions namely the white blood cells episode. MJ has a knack for getting her way without making enemies. He has come to know her character but he never asked about what she does for a living. What do you do for a living? He asked. Vice-president of Human Resources for a company of 4000 employees, I responded. I jumped in because MJ tends to say she is an HR manager which I believe is a huge understatement. Dr L nodded and said: you have what it takes to do that job.

I’m telling the story because I am extremely proud of my wife. I don’t think people that meet her have an idea of her qualities and the depth of her professional achievement.

Latest books 

I just finished “My Life In France”, from Julia Child. It tells the story of her days in France in the fifties and the sixties. I stumbled on that book while browsing the Kindle catalogue. It was fun reading, light hearted and it takes you back in another era. It also made me curious about the recent movie Julie & Julia. I will definitely rent it soon.

Just before that I finished Outliers that I mentioned in my blog “crossroads”. I recommend this book to everybody. It is very interesting. Now I am reading Energy Leadership from Bruce D. Schneider. This book is the introduction to a certification course on coaching that MJ wants to register for. She was asked to read the book before making her final decision. The certification is spread over 9 months with four weekends in New York in a group. She is very excited about learning at a high level, a bit like it would be her masters degree. I am behind her 100%, she just needs to have the OK from her boss.

Have a good week!

Dr. Oz’s colonoscopy | The Dr. Oz Show

For those of you who didn’t know Dr Oz turned 50 this summer. Since he tries to practice what he preaches he had a colonoscopy done. They taped everything for his show. It is really interesting to watch as much for those of you who already went through the procedure as for those of you still procrastinating. Maybe these videos will make you act and get screened.

Directly from his site.

See how colon cancer grows and spreads through the body, and how a colonoscopy is performed.

Dr. Oz takes you behind the scenes of his routine colonoscopy and the shocking outcome he never expected: the discovery of a precancerous polyp. Watch Dr. Oz as he deals with the reality of his diagnosis and emphasizes the need for preventive screenings. Learn more about the test that saved his life and what you can do to save your own.

Click here to watch Part 1: Dr. Oz at home as he prepares for his first colonoscopy.

Click here to watch Part 2: Witness the actual procedure and the moment when Dr. Oz’s physician discovers the precancerous polyp.

Click here to watch Part 3: Dr. Oz’s physician delivers the diagnosis: an adenomatous polyp, the kind that would have likely developed into cancer if left undetected and untreated.

Click here to watch Part 4: Dr. Oz becomes the patient. Here, he discusses the reality of his results and stresses the importance of getting a colonoscopy screening. Fact: 32,000 people die from colon cancer every year because they were never screened.

Click here to watch Part 5: Dr. Oz discusses how colonoscopy is a major preventive measure in protecting your health and explains the colon cancer risk factors.

Hospital Admission

I just got the confirmation. I will be admitted into Sacre-Coeur Hospital tonight at 8. On vient de me confirmer le tout. Je serai admis à l’hôpital Sacré-Coeur ce soir à 20:00.

They even told me my room number, 342. Don’t bother visiting thoug because my stay is short and I will probably be sleeping most of the time.

More news as soon as I can.

Ciao!

Crossroads

We're back from vacation and as I had announced I had a PET scan on August 6 and we got the results on the 10. I have lots of things to talk about so I'll start with the news.
The scan report triggered my haematologist to change my treatment . Those of you who have read read my blog for a while know that I don’t have many options because I am KRAS mutant which eliminates therapy with Vectibix and Erbitux. So we can do two things: Clinical trials or resume Oxaliplatin. Oxaliplatin is the ox in FOLFOX, the cocktail  that I took at the beginning and that was pretty effective. Unfortunately, I had an allergic reaction so we had to stop therapy in January 2009.
My haematologist considering the significantly positive response that I had to FOLFOX (shrinking of tumors), thinks it’s worth trying a challenge to Oxaliplatin. That’s why I'm going to be hospitalized on Monday and Tuesday of this week. I will be on tight medical supervision and they will try to give me Oxaliplatin over eight hours instead of 2. An infusion much slower than usual which could allow my body to tolerate the treatment.
We'll know soon enough.
Otherwise there are three studies currently in the U.S. on promising products for cases like mine. I must discuss them with my haematologist in order to decide which one to register into. In my next blog I will give you the details of these studies.
Apart from that our holidays were fantastic. Aside from the three cockroaches in our rooms and the iffy temperature on the cruise, everything was perfect.
The photos are on Facebook but for those who are not connected with Marie-Josee the following links will allow you to see the albums.
Cruise and Orlando and Palm Beach.
During my vacation I read a lot. I started with two magazines bought at the Montreal airport. One on the topic of technology in the medieval times and the other on the theory of evolution revised because of new discoveries. Some very interesting reading.
Then I read the latest novel by Michael Crichton, Pirates Latitudes. Interesting story since I was always sailing the carribeans while reading it. Then I read Jordan’s youth novel because he found it so good. Then on my new digital book reader, the Kindle DX, I read Blink by Malcolm Gladwell. I had already read his other book called The Tipping Point and I appreciated his style, a cross between a research report and an opinion piece. Blink speaks of the phenomenon of intuition or what he calls Adaptive Unconscious. It attempts to show that sometimes it is better to make decisions without much analysis, but instead to follow our gut feeling.
I also read an old story, Shogun, a novel about medieval Japan. I then started reading Malcolm Gladwell’s (again) Outlier, after reading Stanley Gold’s story: Cancel the Funeral, I'd Rather Play Golf. He shares with us how he survived a metastatic melanoma.
All this reading motivate my children to read to. At the restaurant, people would comment on their concentration on their books.
Tomorrow I will start my preparation for hospital stay. I have to take Singulair to help my body fight any reactive inflammation.
 
I will write again as soon as I can.
Ciao!

Time

Time is a fascinating subject, complex and simple at the same time. I wanted to talk about it because lately at the end of a day I thought that time goes by fast. My reflections led me to want to do more in my day, don't lose your time, don't waste it. Especially since we don't really know how long we have left, you and me the same.


So I told myself that as I need to accelerate my tempo so to fill my days. But there is a paradox. Since my diagnosis the message I perceive from my readings or my conversations is: Take your time, enjoy the moment, slow down and embrace life.

In addition, some studies show that stress can promote the development of cancer so the goal is to reduce stress, in other words slow the pace of life.

But there is another paradox, the slow pace can reduce stress and impact on the physical but at the same time it can increase my mental stress because I did not do everytthing I wanted. I exaggerate a little to illustrate my state of mind ... An internal conflict that sometimes I have between wanting to do a lot and wanting to slow down and enjoy the moment.

Note: The basic assumption is that you can not enjoy the present moment by having a life at full speed. It would be like trying to smell a flower on the side of the road while driving at 100km / h.

I hear you telling me it's about compromises and choices. That's life: a series of choices.

I hope that everyone adheres to this idea that everything in life is a matter of choice (read Stephen Covey to be convinced). There is great freedom in being able to choose and it is also a heavy responsibility sometimes. So much so that some will deny their responsability by blaming genetics or external factors. Example: after an angry outburst someone would say sorry it's not my fault I was born like thiss or sorry sweetheart but my boss asks me so many things that I could not leave the office before. Wrong, these people must accept that they have chosen to throw a tantrum or not to leave the office earlier. The reasons for their choices may be valid or not but the fact remains that it is a choice they made.

Let us return to our subject of time and choices to make. I'm curious by nature so I want to touch a lot. I want to do yoga, judo, practice guitar, listen to music proposed by our club. I also want to be a good husband and a good father, so I want to spend time with my wife fully concentrate on her needs and I want to play with my children and focus completely on their needs. I also want to start a business and be proud of it and I want my father-in-law to be proud of the support he gives me in this venture.

All these things do not easily fit into an agenda that is not open from 6:00 in the morning to 23:00 at night.

Therefore I need to make choices and I do. I take my responsibility for these choices, but not always easyly. There are days like the one that triggered the text where I question myself. Did I do enough? At this moment, I am reminded of my friend Sylvain who once told me: Everyday, Martin, you do your best and you can not demand more of yourself. God himself does not ask more than that.

So, what is time for you, does it go quickly or slowly. Do you enjoy time passing by, the present?

Santé!

Folding socks

I just finished folding fifty pairs of socks. Any fan of this activity among you guys? People who thrive on folding socks...


I can't say it's my favorite activity, but if there is one one thing that MJ, my wife, lets me do without arguing it's that. Me, I let her do the dishes, laundry, grocery ... Finally, pretty much everything else that comes with managing the household. Folding the socks is a minor contribution.

It has gotten to the point where I have developed a method. I had to when 80% of our socks are navy blue or black. In fact the easiest part is Elodie's. They are brightly colored, like pink or purple, and smaller. The challenge is the boys'. My method is to group by colors first or should I say hues, less dark blue together, black in another package and the rest in a final package. Of course, beforehand, I separated the white and sports socks.

In the three dark socks piles, I separate again based on the "pattern" or style. Some are textured only on the upper half, others throughout the length. I can also subdivide based on fabric, polyester or cotton.

Then I take each package separately and spread each sock next to the other in line as for a military review. At this time the operation is done in a very bright light to properly detect the subtle differences in color. I begin to "pair" but sometimes there are still more than 2 socks that can form a pair. At this point I need to rely on my judgement and decide.

After this whole process always remains some orphans. Tonight ... about fifteen ophans are on the table. They will remain in the basket until the next batch unless I find their soul mate in a drawer, alone, awaiting a reunion.

I hope my story put a smile on your face. For me, it brought back memories of my youth. On Saturday evenings watching hockey it was the only personal contribution that my mother would ask of me in the management of her household: folding socks and face cloths on the kitchen table. I was not doing the dishes or my bed...

Santé!

It Ain't Over

Hello everyone,
I know there is some delay between my messages but don't worry things are going well even though I don't write as often.
My time is shared between the chemotherapy treatments, doctor appointments or my psychologist appointments and my family activities.
Indeed since January we went out 4 times (three for me) for cross-country skiing and went to Stowe, Vermont for a ski weekend.
My father-in-law is now back in Canada for his retirement and he spoils us often dining out or with homecooked meal by Loulou (his wife).
We celebrated Valentine's day at home with the family of Marie-Josée. Big party with loud music which had Windows shaking.
Two of my brothers come to spend time with me during my non-chemotherapy week and helps me keep my morale up playing X - BOX 360. Football and hockey of course although we haven't managed to beat the system... yet.

Of course in the last week I spend a lot of time watching the Olympics (day and night).

Yesterday, we had the opportunity to introduce our two boys to a rock show at the Bell centre, Clapton- Beck tour. Fantastic! Thanks to my niece Myrelle for the tickets at an incredible price.
So little time and little inspiration to write...

The meeting with Dr. L mentioned in my previous message was special and here's why. We had not seen him since December 2, not seen since the pet scan. Our nurse called to tell us that he wanted to see us on January 14 even if he was not seeing patients that week. Naturally, the reaction of Marie-Josée and I was a little anxious. Why was it so important to give us the results of the scan while there is no appointments that week. To Josée this meant bad news. For my part, I was scared too. We therefore had an OMPAC counselor (Multi resources agency for people with cancer). Charming lady who has helped us to prepare for all eventualities. Finally, news were good as I mentioned in my other message and Dr. L explained to us that he was leaving for two weeks, and he did not want to leave us without news that long. That is why he made a special effort to see us in-between two commitments at the hospital... not because the news were bad. It goes without saying that we were very excited by the news, Marie-Josée even more than myself because I believe she expected the worst.

We also had an appointment with my surgeon Dr. Y. He got the pet scan results by his Secretary who read the summary on the phone. We could see his face illuminate. It was excellent news for him also. He had unfortunately had to leave a tumour in place in June because it was too dangerous to attempt to extract it, so he expected to see some tumor on the pet scan. He was pleasantly surprised to find that out that the scan didn't show any. It is therefore possible that the HIPEC procedure has successfully eliminated whatever he had left. As for the 1cm ganglion, he told me he could not go in to remove it because he would not find it. He said that at this size, with blood in the cavity, it would be impossible to locate.
What this tells me is that it is not worth worrying about it for the moment. We will monitor it with another scan in 2-3 months and we will not let it become a problem.
If you go by the hospital Sacre-Coeur on Wednesday 24, I will be getting my third chemotherapy. You can come and say HI between 10:00 and 14:30.
Have a good day!

Martin