Anyone with experience for Mantel Cell Lymphoma treatment in TO and OHIP coverage?

@JWu so sorry about your moms diagnosis. ..yes, chemo here is covered by OHIP and Princess Margaret in Toronto is a world renowned hospital. I do believe she needs a referal but I'm not 100% sure about that. The way my fiance got in to see an oncologist so soon was through emergency. I'd like you to meet @Windancer @Twiggy96 @PatrickG and @Cole7469 who can share experiences with mantle cell lymphoma. Thanks for reaching out. All the best to you and your mom.

@BrightyThank you for your reply. I was also thinking to send her directly to emergency room of Princess Margaret once she got her OHIP so she can been seen ASAP. However, I am not too sure if they will accept her? Sorry to hear about your fiance. When he went to ER, how was the experience? Did he got assigned an oncologist right away?

@JWu he went to emergency for another reason, but they discovered the cancer there, by giving him several tests. He was given an oncologist almost immediately and the process went quickly.

@JWu Hello JWu and welcome from ON! I am sorry to hear of your moms' challenges…..

Here is what I found:

How to get treatment at Princess Margaret Hospital?

Any patient that has a valid Canadian provincial or territorial health card or Canadian federal health insurance can be referred to Princess Margaret Cancer Centre. All international patient referrals must go through the UHN International Patient Program (IPP).Jan 23, 2023

@JWu More Info:

I am sorry to read your mother has MCL and is often alone without support.

I understand you wanting to bring your mother to Canada. It is important to confirm beforehand that the treatments she requires are covered by OHIP. I know from firsthand experience that all cancer treatments are not covered by OHIP, even when administered in the hospital’s outpatient clinic. However, patients can sometimes get funding on compassionate grounds if the cancer is advanced. I know someone who is paying for her infusions with her retirement savings because she did not qualify for funding. Neither of us has MCL so I do not know what treatments are covered by OHIP for MCL.

One of the Canadian Cancer Society’s Information Specialists at 1-888-939-3333 may be able to answer your questions and/or direct you to a professional who can confirm whether or not the treatments are covered by OHIP.

Whitelilies posted forms for international patients and that may be a good place to start. If your mother is referred to an oncologist who does an initial virtual appointment, many of your questions can be answered before moving your mother. For continuity of care, the medical team will also be able to inform you of waitlists and treatment options/recommendations for patients waiting for OHIP coverage.

Hopefully, the treatments are covered by OHIP so your mother can move to Ontario and benefit from your in-person support. I hope you have answers to your questions soon.

@JWu sorry to hear about your mom‘s cancer journey…

Having come to Canada as a permanent resident your mom will need to be able to prove residency to get her OHIP. There’s no waiting period any more, but she will need to show she is making Ontario her permanent home and prove her address. This is harder than it sounds as to get most things set up you need a document with your address on! This is something you could be working on while she makes plans to travel.

Good luck to you both - it must be very stressful…xx

@JWu

so sorry about your moms diagnosis. ..yes, chemo here is covered by OHIP and Princess Margaret in Toronto is a world renowned hospital. I do believe she needs a referal but I'm not 100% sure about that. The way my fiance got in to see an oncologist so soon was through emergency. I'd like you to meet @Windancer @Twiggy96 @PatrickG and @Cole7469 who can share experiences with mantle cell lymphoma. Thanks for reaching out. All the best to you and your mom.

Yes as most people know around here and as Brighty said, I am a 3x survivor of this insidious disease and a 2x survivor of Mantle Cell, I truly hope for both you and your mother. If I can answer any questions please don't hesitate to ask.

@Whitelilies Thanks for your reply. My mom is a PR so she will likely go through a regular referral rather than an international referral once she is here. Based on your experience, is there a long wait time to get an oncologist? For my own chronic pain, there is a ridiculous amount of wait time and I am concerned if my mom has to go through that if I take her here.

@S2020 Thank you for your reply. That's exactly the current doctor's concern. Her current treatment of MCL is covered by the universal care in my home country. The doctor warned me to ensure her treatment here can be covered as those MCL drugs are very pricey. Right now the challenge is I don't have access to MCL oncologists here so I don't know who I can ask. I asked her current doctor's to provide the names of chemo/targeted medicines my mom is received now and once I got that, I will call CCS's specialist to seek for advices.

@Essjay Thanks for your reply. Yes, I am aware of that. I am calling Service Canada to see what is the best way to approach this. My understanding is that I can get her a Photo ID which will include her permanent address which will be my address. I hope it can be as simple as that. 🙏

@Windancer Thank you for offering the help. I really appreciate it. I am so sorry to hear you have been through MCL so many times. So glad you fought for it and survived. I wish my mom can find her way to gain the strength you possess to fight for MCL. Couple questions: 1) Where are you located? I am in Toronto. What's the best way to find a good MCL oncologist? 2) Is there a lengthy wait time to get a MCL oncologist? 3) What kind of treatments you received? Are they covered by OHIP? Based on your experience, what are the potential expenses will not be covered by OHIP?

Thank you! I am still navigating through the system and educating myself along the way so I can be in a better position to assist my mom.

@JWu:
1) Where are you located? I am in Toronto. What's the best way to find a good MCL oncologist?

2) Is there a lengthy wait time to get a MCL oncologist?

3) What kind of treatments you received? Are they covered by OHIP? Based on your experience, what are the potential expenses will not be covered by OHIP?

Thank you! I am still navigating through the system and educating myself along the way so I can be in a better position to assist my mom.

1 - I was in Regina, Saskatchewan but now in Montreal.

My last exposure to cancer was 2008 so much has changed since. I had my second SCT in October of 2008 in Montreal. I came to Montreal instead of going to Seattle where the doctors wanted me to go because I had a brother and sister in law living here since 1988 so I had much more support here. When I moved here in 2017 I saw the same oncologist that I dealt with back in 2008 which was great.

2 - I was very fortunate back in 2008 I really had no wait time, unfortunately the pandemic and the current hospital situation has changed that greatly.

3 - I had an Allogeneic Stem Cell Transplant in 2008 in Montreal, 2 rounds of chemo and three months in the Royal Victoria Hospital. Then I stayed at my brother's for 3 months. Fortunately everything was covered by my Saskatchewan Health but as I said that was 15 years ago and may be different now and may vary province to province.

Terry