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My oncologist at Grand River Hospital, in Kitchener, Ontario, has been in touch with London Health Sciences (where I was diagnosed and had the debulking/hysterectomy surgery) to inquire about any Clinical trials that would be appropriate for me.  When I met with her last week, I did ask her about Princess Margaret or Jurvinski and told her that I would be more than willing to travel if either of those facilities had anything to offer.  I just got a call from Princess Margaret and I have a virtual appointment for June 19th.  If anybody has any advice regarding clinical trials, I would be happy to hear it.  My main goals are to survive as long as possible, with as high of quality of life as possible.  Thanks so much,

Sheryl

@GloHo any insights you can provide?

Hi Sheryl 

my oncologist at jurvinski has done the same with me. I have a virtual appt on June 9 th with Dr Oza. I'm looking for insights also .  I will keep you updated how my appt goes so you have an idea.  

Thanks mom2boys. I will look forward to hearing how your appointment goes. This sure is a learning experience (all of which, I am sure we would rather not know!). Lets hope we hear something promising😊
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Hi Sheryl 

is your appt virtual I forget what you had mentioned. You will need about 3 hours of free time. 

dr Oza gave me a lot of information it's a bit over whelming. I suggest someone be with you to take notes wether your inperson or online. It's a lot to take in. He does feel he has 3 trials for me to try so I will be having further testing with him in a few weeks. 

2 of the trials require me to go to PMH 2-3 times a week. I'm not sure I can do that. I live an hour away and don't drive. The 3rd trial I can do closer to home but it will not be available for 3-6 months. So many decisions.  Or I can just go back to reg chemo. I'm doing the testing to see if I even qualify for sure for any of them.   

Hi mom2boys,

I have a virtual appointment next Thursday. I have been reading over some information about clinical trials. I have a meeting with a Dr. Ana Veneziano, so I will be interested to see what she has to tell me. I am platinum resistant, so I imagine that will factor into whatever trials she has to offer. Good to know that the appointment could take 3 hours. I will try to ensure that there is someone here with me to help with notes and information processing.

Sounds like you have lots of decisions to be made. 2-3 times a week into Toronto does sound pretty gruelling. You could always consider staying at the lodge associated with Princess Margaret. Good luck with your decision making. Lots to think about, for sure.

Take good care,

Sheryl
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@mom2boys

Hi again.

You do have a lot to think about. Is there one trial you are leaning towards or the team has suggested is the best option for you at this time? A lot will depend on your results…that may narrow it down for you.

Some trial schedules start out with more appointments at the beginning and then ease up after a few cycles. Any chance the trial you mentioned has that type of schedule? 

Is taking the train an option for you? I know people who take it for a one day appointment at PMH but I'm not sure how you would feel about taking it in for 2-3 days each week!! 

Here is some info for anyone considering staying at the Lodge  

$30/night - includes accommodation, 3 meals a day with two options at each meal and shuttle to PMH. The Lodge is flexible if you have to cut your trip short because of a delay or stop. They will refund or credit your account. 

There is a high possibility that you will have a roommate - they are VERY busy. I was a little leary about that when I started going but I have made some great friendships at the Lodge. I even had a regular roommate for a few months…we got along, were at the Lodge at the same time and requested to be roomed together. Everyone there is friendly  

The meals are sometimes a little spicy and not to my liking. I usually don't have a problem finding someone who would like to go out for a meal 😋. They have a microwave, toaster and kettle for resident use. They sometimes make porridge for breakfast and they often have some yummy soup at lunch time too.

The shuttle schedule is for both PMH and Sunnybrook. The schedule for PMH has more trips so it isn't too bad timing your ride to PMH. The Lodge is walkable to PMH…about 20 minutes.

If you have a car, there are a few options for parking.

• There is a public lot just south of the Lodge ($15/day $10/night = $25). That is where I park because I like to have my car nearby in case I want to go out.
• There is a discount parking lot near the hospital. I believe there are details on the PMH website.
• Some people park near the Vaughan TTC station and use public transit to get to the Lodge because they don't want to drive into Toronto.  

If you don't have a car…people take whatever transportation they are using that usually brings them into Union Station. They will do the 30 minute walk, TTC or Uber/Taxi from there to PMH. 

The process…

Let your trial nurse know when you will need accommodation and they will send an email to the Lodge. The Lodge will give you a call to confirm your dates.

For my current trial, I arrive early Monday afternoon (drive from London) so that I can be there for my clinic appointment on Tuesday. Then I'm there for my treatment on Wednesday and stay over as a precaution. I leave as soon as I wake up on Thursday.

If anyone has any questions about the Lodge, let me know.

#Princess Margaret Lodge

@GloHo you are once again an amazing source of knowledge. Thank you so much for all the information you share!!!

#Clinicaltrialsandresearch #PMH Lodge #PrincessMargaretLodge 

Thank so much for the information GloHo 😊

Hi @mom2boys and @sheryl...I hope you are both continuing to get the information and support you need regarding the clinical trials. I believe @sheryl that your virtual appointment may be today. I hope it goes well and the information others have provided will help as you navigate your way through this phase. I'm thinking about you both!

Thank you so much for your support. My meeting is tomorrow and all of the information that I have received has definitely prepared me. 😊😊
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@sheryl and@mom2boys

Hi. Here is some info you may find useful…

You will be in great hands at PMH! I have found that they recommend the best trial for me at each turn in my journey. I was diagnosed over 6 years ago and am currently in my 4th trial. I am feeling fine, good quality of life (working around treatment schedule can be tricky but if that's what I have to do, I'll do it!!)

When I meet with them about a new trial, the Dr suggests a trial. If I indicate I am interested, they provide a copy of the details for the trial (on paper) and then I speak with the trial coordinator about the specific details for that trial. I'm sure they can send the info to you electronically. That way, you can follow along with the trial coordinator. Ask as many questions as you want…make sure you understand everything fully. You do not need to make an immediate decision…take a couple of days if you need to review the paperwork and ask more questions.

Things I like to be sure I'm clear on are:

• what pre-tests are required to determine if I'm eligible (blood, urine, heart, eyes, biopsy, etc.)
• schedule 
• known side effects/frequency for other patients (if known) 
• what happens if my blood counts dip below trial requirements (delay, dose decrease, infusion, end of trial). They sometimes like to be vague here because everyone is different. Push the point if you're not happy with their response. 

When you decide on a trial, be prepared to be back and forth to Toronto for all the required testing to determine your eligibility. The trial can  begin 28 days after your last treatment.

When you are approved, they get you started as quickly as possible.. usually the following week  

I have found that treatment weeks are pretty similar…clinics are usually on Tuesdays. Pre-Day1 you will need to get blood in lab, one hour wait for results, check in and wait to meet with Dr and trial coordinator (together), Dr will review results and, if everything is ok, they will order drugs for treatment (chemo), ask about your symptoms, give you a quick physical, order pre-meds for treatment day, if any, that you may need to pick up at the PMH pharmacy (if required for trial, no cost to you).

Day 1 sometimes you have to meet with Dr again, usually not…just check in at chemo unit…and wait! Some trials have required meds prior to treatment and most will have a post treatment observation time. Blood draws may be taken at different intervals before/during/after treatment. I was on one trial that required an overnight stay at PMH.

There are many different trials and each one is unique. 

I hope the above info is useful. Let me know if you have any questions or would like to speak to me directly…I'm here if you need me. 

Thanks so much GloHo. I have been following you and your openness to Clinical Trials and have felt inspired by you. I am excited and scared but feel that this is the way to proceed for me. I am going to read over your post again and write down some questions to ask and information I need to focus on. I really appreciate your information and will let you know how it all goes.

Sheryl
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@sheryl

Thanks for your vote of confidence. So glad that journaling my personal experiences may have lessened some uncertainty and helped nudge you in this direction.

Have you taken a look at the trials database (clinicaltrials.gov)? If not, you should take a look. You will see the different trials available as well as the criteria they use to determine eligibility for each. You will have a better understanding of the types of things that the trial coordinator will discuss about your specific trial. The trial coordinator goes through every section of the protocol with you and you may ask as many questions as you want.

You mention in your bio that you do not have any genetic markers. Which genetics test did you get done? Was it through London or Grand River? 

There are a lot of trials and I'm sure they'll find one that is best for you at this stage of your journey. 

Good grief…there are so many more things I wish I could share succinctly but that just doesn't seem to be my style 🤣🤣. I will leave it at this for now. Again…any questions…just ask. 

Of course…just thought of something else I'd like to mention about participating in trials 🤪.

I like the constant monitoring!! Depending on the trial protocol…you will get blood (including CA125), urine and maybe an ECG prior to each treatment. There are also other specific tests. For the trial I am in, I get a CT and eye exam every 8 weeks.

As an out of town patient, I appreciate that the trial coordinator is able to book my eye exam when I'm in Toronto for treatment. Unfortunately, CTs you have to take them when they are booked. For me, this usually means an additional trip to Toronto. 

Thanks again GloHo.  I did look at the clinical trials.gov sight you recommended.  There sure are a lot of them.  I also think the close monitoring would be very reassuring 😊

@GloHo thank you for all this information. You are the best!!!!

I did write a response earlier but I had trouble with it. sending. I was diagnosed 2006 with HGSO. I was a patient at Grand River. I had my initial surgery at Toronto general. After a year I transferred to juravinski where I remain for 14 years. My oncologist retired and referred me to princess. Margaret. I have taken part in two trials there. I live in Waterloo. I see you have had lots of good advice. At the present moment I am going every week. The train is a great option. As you know driving is treacherous to Toronto. I am happy to help in any way I can with information. Wishing you the best.

Thank you so much Teal Girl.  Wow diagnosed in 2006.  That is definitely very hopeful.  I will definitely reach out should I become involved in a Trial.  Train is definitely a good option.  

Teal Girl, 2006!  That gives me hope for this terrible disease.  I'm in BC not sure what trails are happening here, but if the day comes I need to move to Ontario to survive I probably will do it.  
🙏🏻

Do you have a gynaecologist/oncologist in BC ?  If you can get dr Carleson you will be in very good hands. She was mine at juravinski till she moved in sept.  I miss her dearly 

@Alexson agreed!!!!!!! 🤞