Welcome to the Uveal Melanoma Patients Discussion Forum
May 7, 2015 at 9:29 am #7202AnonymousInactive
Hello fellow OMers, family, and friends. I am Joan Bowness and I am a peer support volunteer with the Melanoma Network of Canada (MNC) for ocular melanoma patients. Diane Harty has asked me to open MNC’s newly created Uveal Melanoma Patients Discussion Forum, so here goes. I’d like to begin by thanking MNC for expanding its focus to include, and highlight, ocular melanoma on its website and in its mandate. Ocular melanoma is, indeed, an orphan/rare disease especially in Canada. I’d also like to congratulate MNC on the publication of its resource booklet “A Guide to Uveal Melanoma”. It is an excellent resource with input from the medical community as well as one of our own OMers. The booklet includes important information that we all need to know as well as a resource list. I’ve promised Diane Harty that I will add to that list shortly.
Now, to briefly introduce myself. I was originally diagnosed with choroidal melanoma in late 2003, and treated with brachytherapy in early 2004. For ten years, I faithfully returned to PMH for follow-up checks. I was totally blind-sided (bad pun, I know) in the spring of 2014 with news that the tumour had cloned itself and re-grown. There was no other option but to remove my eye. Once I learned that prognostic genetic testing was available, I was determined to have it done. Fortunately I found Impact Genetics Canada less than a week prior to my scheduled surgery, and was one of the company’s first patients to be tested with its newly approved uveal melanoma test. The results were not what I wanted to hear. They have put me into a ‘high risk’ category, but the silver lining to that cloud means that the Canadian medical system now schedules and financially covers me for regular MRI, CT scans, and x-rays.
I invite all of you, especially you Canadian OMers, to join me in this Discussion Forum. Many of us belong to other forums and we’ve met each other ‘digitally’ on those websites. However, I feel that it is important that we also participate in a Canadian forum so that we can get a broader understanding of what our medical system offers us. It will also enable us, together with MNC, to be more pro-active for the care and follow-up that we need. Hope to hear from you soon.
May 7, 2015 at 4:05 pm #7207AnonymousInactive
Hi, I am Pat Lawton from Lethbridge. I received external beam radiation at PMH in April, 2009 for a choroid all melanoma. All follow up for my eye has been at the Eye Clinic, Rocky View Hospital in Calgary. I have le most vein n my treated eye, but hey Avastin shots to maintain a more normal looking eye. I was seeing an neologism at the Cancer Clinic in Lethbridge semi annually until last year. Check ups have been moved to annual now. Chest x-Ray. Blood work and over ultra sound. I have been reassured (told) by my Dr that any Mets would show up n blood work. So far all is good. I have never heard of Impact Genetics, will have to check this out as I can be a cynic about certain hints I am told (I have a daughter with a very rare hood disorder – at diagnosis 30 years ago there were about 250 cases worldwide I have learned the hoops that you can be put through).
My husband and I have retired early, sold the house, and are RVing around Southern U.S. In winter and home in the summer.
Great forum focusing on Canadians – thanks!
May 7, 2015 at 4:36 pm #7208AnonymousInactive
Welcome to the forum Pat. Impact Genetics is a company here in Ontario which has developed diagnostic genetic tests for our disease. A number of clinics in the US and are now using its diagnostic test. It is similar, but different to the Castle Biosciences test and its website explains those differences. Prior to this new test which I was able to get, Impact developed a genetic test for retinoblastoma. The head of the company. Dr. Brenda Gallie, is known worldwide and was very instrumental in the treatment of the infant triplets who came from Alberta to Toronto to be treated for retinoblastoma.
May 7, 2015 at 7:19 pm #7209AnonymousInactive
Thanks for the information! How did you go about getting the test from Impact? Was it ordered by you family physician or oncologist? I do feel knowledge is power and I prefer to know odds and possibilities. Control freak,perhaps? Interesting about the triplets, the parents families are from Southern Alberta and their Aunt is a friend of my daughter. I follow them with great interest.
May 7, 2015 at 7:48 pm #7215AnonymousInactive
Hello again, Pat. I too am the type of person who wants all the facts and can be quite persistent about getting them. I found out about Impact Genetics through the Ocular Melanoma Support Facebook page about a week prior to my enucleation surgery. I contacted their rep, got the information I needed, and decided that I wanted the test. My ocular oncologist ordered the test and together with the surgeon at another hospital, a pathologist at a third hospital, Dr. Gallie, and Jaime Jessen, the company rep, they made it happen. Impact’s test deals with DNA while Castle’s test looks at RNA. This means that I know exactly what genes in the tumour were wonky and/or missing and why I was categorized as ‘high risk’. I don’t know your particular situation, but Impact can perform their test on post-plaque tumours if enough tumour tissue is still present. Of course you would need a medical person to perform the procedure and many of them are hesitant to poke the ‘dormant bear’ (i.e. tumour). Ontario still doesn’t cover the cost for this test, but it’s my understanding that either BC or AB (or both?) now pay for it. If you want to know more, I suggest you contact Jaime @ Impact Genetics. Its website URL is http://www.impactgenetics.ca. Tell Jaime I gave you her name. She’s an absolute gem.
May 7, 2015 at 11:49 pm #7216AnonymousInactive
Hi, I am Jennifer from Edmonton, Alberta. I was diagnosed on Fathers Day 2014. I went into the hospital with what I thought was just a detached retina. I had plaque brachytherapy 5 weeks later at the Cross Cancer Clinic in Edmonton. I was offered Castle testing which showed I was class 1a, low risk. I see the oncologist every 3 months for another year.I had my first annual liver blood work last week and have my liver ultrasound and chest x-ray tomorrow. Will get the results on May 26. Very happy to see OM on this website. The patient booklet looks amazing, I wish I had that when I was diagnosed.
May 8, 2015 at 11:29 am #7228AnonymousInactive
Hi Jennifer. Welcome to the forum. So glad that you didn’t experience the problem that some of our other Canadians OMer friends are experiencing. Hopefully it will be resolved soon. Interesting, you got your diagnosis the same day as I got home from my surgery. What a gift to know that you are at low risk, and thumbs-up for your doctors for following up with regular blood work, xrays, and ultrasounds. When I was first diagnosed in 2003, ultrasounds were not an option for anyone until liver function tests showed an abnormality. I, like you, also wish we’d had a patient booklet to give me information and support. We are now making progress, step by step. We can all be thankful that the Melanoma Network of Canada is doing its part by recognizing our particular ‘brand’ of melanoma and is now advocating and providing information on our behalf.
July 24, 2015 at 11:44 am #7451
Hey Joan – so happy to see that you have launched this forum and are here to help others. I will make a concerted effort to reach patients that have Uveal melanoma and let them know of the website as well. If you could also extend your reach and let them know in all of the areas that you have, that would be great.
I will also reach out to Dr. Krema at PMH to let him know of the site and to direct patients here as well. Please don’t get discouraged if it takes a while to get people involved!
August 3, 2015 at 11:03 am #7500AnonymousInactive
Good to see you here. We OMers are thankful that your organization has taken us under your wing and begun to focus on our particular brand of melanoma. We congratulate you on the publication of your patient booklet. I understand that Dr. Krema is now handing it out to newly-diagnosed patients. I believe that we now need a sticker, or something similar, to affix to the front of the booklet alerting these newly-diagnosed people to contact your organization ASAP for more information and for peer support by way of phone or email chatting should they desire it.
Congratulations also on your newly designed website. Lots of stuff there. Really impressed about hiw you’ve reached out to campers to get the ‘sun smart’ message out there.
August 3, 2015 at 2:11 am #7498AnonymousInactive
I am Connie from Regina. You are doing a wonderful thing by starting this support discussion group. My left eye was eunucleated 2 years ago and although there is a lot of info online most of it originates in the states or the UK. It’s great to see Canadian content!!!
The patient booklet will be a great help to people recently diagnosed. One thing that I noticed that is different here on the prairies is that our prostetics are made in a few hours – not several weeks as they apparently are in Ontario. They are not done right away – we still have to wait until the healing process is complete before it can be made.
Now that I have found this site I will be coming back to see what is new. I just w anted to write a quick note to say hi
August 3, 2015 at 10:56 am #7499AnonymousInactive
Hi Connie. Welcome on board. I agree that most of the information is ‘US or UK based, so it is good to get a Canadian site going. Interesting to hear about how, and when, your prosthesis is made. We get a ‘custom conformer’ during surgery and I actually had another custom conformer, painted to look like an eye, as my first prosthetic because there was a tiny area in a corner that hadn’t healed properly. I feel fortunate to have received such excellent care this time round and am excited about all the new research that’s being reported. We may not have a cure yet, but we certainly have more options available that a few years ago should we need them. Like Annette, I ask you to spread the word of this site to your fellow western Canadian OMers. Stay well. Joan
August 3, 2015 at 4:25 pm #7501
Hi Joan – great to hear from you! I was actually going to give you a call and have a chat about the peer to peer training program. We are still refining but I really would like to get you involved and also to look if there is a need for other areas of support for patients and families with Uveal. A unique situation came up over this weekend, and I wonder if you have any ideas from the contacts you have made. A patient’s family contacted me from the US looking for help. This poor fellow is quite young (58) and in great health – other than the UM. It started in his eye just over a year ago. I think, if I understand, he has been operated and irradiated. It has now metastasized to his liver and he is experiencing liver failure. I know it is difficult at this stage to treat – but are you aware of anything world-wide that can be done at this point? They have the means to go anywhere and are quite desperate because of the decline in his health and the poor outlook. I think he was getting ready to try the TILs transplant, but his status with his liver declined too quickly, so he is no longer eligible. Your thoughts are welcome!
December 7, 2015 at 6:18 pm #8327AnonymousInactive
Hi All, I am Marty from Calgary and very happy to find a canadian forum. I was diagnosed with OM in Sept 2014 and completed brachy therapy on October 2014. I have a Class 1A gene proile for which I am very grateful. Oddly enough I have discovered that Jennifer from Edmonton who also posted on this forum went to the same small high school I went to in Red Deer. She graduated in 1982 and I graduated in 1980. Not sure what the odds are of that but they must be in the zillions…
I have decided not to have any of the ultrasound tests given that there is no treatment for METS at this time. My Oncologist gave me the option and simply said I can tell you in advance that you have it and ruin the last few months or simply live with the fact I may get it and get on with my life as if I have never heard of OM. I am a very proactive guy with my health but dont have any need to know something that is out of my control. Keen to hear how others are feeling about this strategy. All the best to each of you on the forum.
December 8, 2015 at 11:37 am #8328AnonymousInactive
Welcome to the forum, Marty. Glad you have found us; sorry for the reason. Particularly thrilled that you have re-connected with an old buddy. Ironically, the day I found out that my OM had returned and that I needed an enucleation, I sat beside a lady in the hospital blood lab and we started to chat. In that entire hospital with hundreds, if not thousands of cancer patients entering and leaving in a single day, she too was an OM patient who had also lost her eye AND who had grown up in the same rural town where my husband and I went after we graduated from university, AND whose older sister I had coached at the local high school. It is indeed a small world.
Now to respond to your post. Class 1A is the best prognosis one can hope for with the Castle Test. Having said that, Castle does have some breakdowns. I know of one lady in Saskatchewan who had the same prognosis this past spring. Three months later, she was dealing with metastasis. I also knew another guy from Vancouver with the same scenario. He is no longer here. So…what can I share with you?
First, your odds are developing mets are low and maybe even better than that. You may very well be on the side of the ~50% whose eye tumour never goes anywhere else. I partially agree with your oncologist, but not entirely. I agree that there is no cure YET; however, there are promising treatments that appear to be prolonging life. Think of all the cancers for which there was no cure until a few years ago. We’d like to think that ours will be added to that list someday soon. However, backward thinking won’t make that happen!!
The Canadian system is vastly different than the American system, and at this point it seems to offer ‘scan-type’ monitoring only to those who are genetically at high risk. In the US everyone, regardless of genetic profile, is encouraged to be scanned regularly. Some doctors use MRI; some use CT; some use ultrasound. You definitely need some monitoring b/c to do nothing is to invite the possibility of full-blown metastasis before you even realize that there is something wrong. At that point, the odds are really not in your favour. So… I would be proactive in requesting some type of monitoring, especially in this day and age of rapidly developing immunological, and other therapeutic, trials. The standard liver function blood test just doesn’t cut it. At the very least I would go after an abdominal ultrasound every 6 months. This will catch distinct liver mets relatively early. I know where your oncologist is coming from, but he sounds outdated & somewhat paternalistic & needs some subtle encouragement to look ahead at what research is discovering. I know one lady from Saskatchewan who pays to have abdominal ultrasounds done. She was originally treated without benefit of genetic testing and wants to stay on top of things.
Of course, the big determinant is your own response to this disease. Some people really don’t want to know and prefer to enjoy life in joyful oblivion until is deals them a bad card. I’m the opposite. When my tumour recurred, I fought for genetic testing. The results were NOT GOOD, but I don’t worry about it every day or even every second day. I am, however, mindful that I need to keep things in order and do what I want when I want rather than someday down the road. I’m the type of person who wants all the information and who decides how I want to deal with it. I don’t want a doctor telling me not to worry. That drives me crazy and it happens too often.
If you want the latest clinical and scientific information, then I’d suggest joining the OCU-MEL listserv. The URL is http://listserv.icors.org/scripts/wa-ICORS.exe?A0=OCU-MEL. You have to register on the general site, then you have to scroll down all the various listservs to get to the one that’s specific for OCU-MEL. There is tons of current information on there, as well as some very strong opinions. Be mindful that most of the postings are American or British. The British healthcare system is somewhat like ours. There are a couple of forward-thinking centres (like Southampton), and some that are still of the opinion that no cure means nothing can be done. Even the OM gurus in the USA have different opinions on scanning choices for ongoing monitoring. There has been a wicked discussion lately on the practice of ‘capitation’ in the US and the pressure on doctors to limit the number of scans they order. There is a man from Alberta on this listserv named John Malyon. He is an absolute encyclopedia of information, and he certainly knows the Canadian scene.
Another good source of support and information is a Facebook group called Ocular Melanoma Support. If you go to it, look in the top right hand corner and you can see where you contact Elizabeth McBride who is the owner of the group and the person to register you. This group also provides information, but it truly is a more sociable type of support.
Not sure if this will be helpful to you, but I hope so. In the meantime, stay well and I’ll monitor this site a bit more closely and watch for follow-up replies.
December 8, 2015 at 2:31 pm #8329
Joan is a wealth of information and just a wonderful person to chat with on this topic. Hoping her insights help you. Scanning is a big issue in Canada. US does it far too often and can be very detrimental to overall health. Here, we may do it too infrequently. Regular melanoma patients were often told there was no need to scan as a spread meant there was really not much treatment, so why be proactive? As Joan mentioned, treatment is evolving at an amazing pace, so getting on top of it might mean the difference. A reasonable monitoring with ultrasound is often a good thing that carries much less risk than scans. Something to consider. Best and keep us posted. Also, if you know other patients, tell them about this site so we can keep up the dialogue!
December 8, 2015 at 4:50 pm #8343AnonymousInactive
Okay…I will schedule my ultrasound next week. All of your points make good sense and the ultrasound seems to be a good balance. Thanks.
December 8, 2015 at 5:00 pm #8344AnonymousInactive
Sounds like a good place to start, Marty. Best wishes for a positive journey in this strange landscape. Keep in touch … and please do follow up on Annette’s request to spread the word that we’ve got a homegrown Canadian site just for those of us north of the 49th. Joan
December 9, 2015 at 12:06 am #8346AnonymousInactive
I’m from Lethbridge, so not far from you. I was diagnosed 6 1/2 years ago. At that time there was no genetic testing done. i have opted for abdominal ultrasound, first 5 years every 6 months, now have moved to annually. I have a great family Doc who does check not my ailments thoroughly when they do arise. As I had Direct Beam radiation, I have been receiving Avastin shots to control the radiation damage to the treated eye. As has been mentioned, best to err on the side of caution with this!
All the best!
December 9, 2015 at 9:57 am #8347AnonymousInactive
Hi, Pat. Good to ‘see you’ once again. Thx for chiming in to reassure Marty that he’s following the right course of action for his situation. Glad that your family doctor ‘gets it’ and is watching you closely. Hope the Avastin shots continue to control the eye damage.
My GP is also great and I thank her every time I see her. When I was re-diagnosed in 2014, I wanted scans but didn’t yet qualify for them according to protocols at PMH in Toronto. Her words to me were [sic]”I know nothing about this disease, so you have to keep me informed about what you need to stay on top of things.” However…it’s an entirely different story with regard to (unnecessary?) diagnostics for diseases and conditions with which she is familiar, but she’s on board where it counts the most. Take care. Joan
December 9, 2015 at 1:09 pm #8351AnonymousInactive
Thanks to all of you for your feedback. It is a surreal journey walking around with the possibility a ticking time bomb in your blood. The question is how do we handle the uncertainty of the potential explosion that may have been lit with a short or long fuse. We don’t know which. Or for some there simply is no fuse but we have no way of knowing that and wonder anyway. Very odd set of circumstances to say the least. First, let me say that the program being run in Western Canada by Dr. Weis is top notch. It has been fast, efficient, effective, informative and thorough. My rating for Dr. Weis and his team would be a 10/10. We are very fortunate to have a young, bright Doctor based in Calgary looking after all the western Canadians that get OM. Super pleased and proud to be in the Alberta Health Care system. It has been a very good experience given the circumstances. Not sure about the Oncologist yet so will report on that later. He did say you are class 1a, there is no treatment so you may as well just get on with your life and enjoy it was a very viable option. Other option is ultrasound testing every year but they are prone to false positives which will lead to a lot of digging around and stress and for what? Not a bad point I thought.
Here is where things get intersting for my treatment plan. In july of 2016 I will be moving back to Arizona where I resided for 10 years. My challenge is going to be continuity of care and strategy. I will be in a very unique place where I have travelled both sides of the border with this crazy blood bomb as I call it. I will try and keep my Canuck friends up to speed on the differences between the two systems. Hopefully, I will be able to continue my relationship with Dr. Weis as well so I have the best of both worlds. Wish me luck and I will be in touch. Best of luck to all of you as well. Lets find a way to hammer OM together. Marty
December 9, 2015 at 2:30 pm #8354AnonymousInactive
Here are some highly regarded ‘names’ you can file away in preparation for your move back to Arizona and getting yourself re-established in the American medical system. All are highly rated, highly published, and forward thinking. They ALL provide post-operative scanning options.
Dr. Bertil Domato @ UCSF Medical Centre (San Francisco, CA)
Dr. Sapna Patel @ MD Anderson Medical Center in Houston, TX
Dr. Tara McCannel @ Stein Institute, UCLA (Los Angeles, CA)
As for false positives … I’d rather have a false positive than an undetected one!!
December 9, 2015 at 3:31 pm #8355AnonymousInactive
Joan, thanks for the names, very helpful. I beleive the Dr. at UCLA would be the closest and I could drive there. Do you know anything about Dr. Madhavi Kurli in Phoenix? She looks to be new to the OM game. Marty
December 9, 2015 at 4:17 pm #8356AnonymousInactive
Not familiar with that name, Marty. I will ask if anyone on the OCU-MEL or Facebook page has any info and will get back to you?
December 11, 2015 at 3:09 pm #8376AnonymousInactive
Marty: Have heard back from two people. One knows ‘of her’ the other is a patient. Appears to be highly regarded. One wrote that: “Yes!! Dr Kurli is my Doctor , she diagnosed me August 2013 , I had the plaque surgery done by her , and have been seeing her ever since , she told she trained in London and the States , and was scheduled to go Mayo Clinic here in Phoenix . But she’s opened her own office now , great Doctor and lady very down to Earth.” The other said, “Yes. I’ve heard very good things about her. She did some of her training at NY Eye & Ear Infirmary.” If you wish, I will try to put you into contact with the person who is her patient. Joan
October 24, 2017 at 6:53 pm #14728AnonymousInactive
Hello, I am a female and had my eye removed due to choroidal melanoma. After a year of having my surgery, a CT scan discovered a 9mm ill defined heterogeneous and partially hyperechoic lesion in the right hepatic lobe. Normally directed flow is observed in the main portal vein. After 2 additional CT scans 6 months apart the little guy has not grown and it does not appear to be cancerous so far and for that I am thankful. However being that most patients like me so I am told do not live for past 5 years and this is my second year from surgery date I am now concerned and am going to see a liver specialist to see if the little guy can be removed and or do we just leave it alone and or can I start immunotherapy or something to prolong the growth of this thing mind you it has not been determined that my cancer has spread. I was wondering if any of you have been through something similar and could let me know and or what I can expect and if perhaps you too have heard that people live a lot longer than 5 years after having their eye removed. Thank you for your assistance.
October 25, 2017 at 9:22 am #14732
Hi there – while I am not the expert in this type of melanoma, I will reach out to a few other patients to see if they can provide some insights for you. I know it is a horrible diagnosis and living with the possibilities is really tough. Consulting with the experts is ultimately the right thing as no two patients are alike. Hoping you get some options soon.
October 26, 2017 at 5:47 pm #14768AnonymousInactive
Annette has asked me to respond also to the post from “Scared to Death” because I also have undergone enucleation in 2014 as well as brachytherapy in 2004. I have not developed metastatic disease as of this time. I’m not quite sure where to start but I will give it a try. Where you got information that patients like yourself do not live longer than 5 years? I can re-assure you that patients certainly can, and do, live longer, and that this figure is only a statistic. I know one lady via an online support group who is still alive after 27 years of living with, and treating, metastatic ocular melanoma. You are an individual, not a statistic, and there are many factors which will determine your longevity. Yes, we all understand that there is no cure for the metastatic form of ocular melanoma but there is much activity in the world of research, clinical trials, etc. that is showing great promise. I personally was treated @ Princess Margaret and now undergo routine diagnostics under the care of Dr. Hogg who is a medical oncologist who has taken us OMers under his wing. He gave me a piece of advice when I first met him and I will share it with you. He told me to go out and live my life to the fullest and try to stay healthy for as long as I possible because the research is advancing so fast that he could almost guarantee me a better prognosis in the near future than he could at that date. In other words, he was telling me that ‘time’ would be my friend. The intervening years have proven him correct when I look at results of some of the new treatments. Some people actually go one step further and follow a regimen of adjuvant therapy which boosts the immune system in the belief that it can ward off metastases for a longer period of time.
It is normal to be fearful, but it is best to not let fear control your life. Positive thinking goes a long way to helping us live with uncertainty. I am willing to speak with you personally if you wish; however, I would ask you to go through Annette Cyr, the Executive Director of the Melanoma Network of Canada. In closing, I with you well and hope that those little beasts are truly benign.
December 2, 2017 at 3:07 pm #15144AnonymousInactive
I live in Ontario and recently had brachytherapy at Princess Margaret hospital for Choroidal Melanoma. It’s a frightening thing to find out and I’m trying to stay positive. So far I’ve recovered well, but wondered how quickly sight returns to the affected eye. All of the doctors mentioned that the growth was small, but it is close to the Optic Nerve and I’m still waiting to see if my sight improves. Right now things are pretty blurry, even though it’s been a month since the plaque was inserted (and three weeks since removal). I’m 74 years old, but in good health aside from this setbaxk.
December 4, 2017 at 11:15 am #15145
Thanks for reaching. This is indeed a tough diagnosis and most people are pretty overwhelmed and anxious, as anyone would be. You are not alone, even though sometimes it can feel like it. We have quite a few patients that post or contact us with this same diagnosis. It sounds like they may have caught it early from what you are describing. It will help too that you are in good health overall! As I am not a uveal patient, I can’t really comment on your question, but will reach out to a few of our uveal patients to see if they can provide you with some feedback. We also have a general guidebook on our website here for uveal melanoma, that they usually hand out at the clinic at Princess Margaret – if that is where you have been treated. It is general information about the disease, so if you haven’t received, please let us know and we can email you a copy.
December 4, 2017 at 1:12 pm #15146AnonymousInactive
Good morning Bonita. My name is Joan. I live in Ontario and I am also a senior. I will try to respond to your questions and concerns. I too am a Princess Margaret patient and I originally had brachytherapy in early 2004. It is a frightening diagnosis, both because of the health implications it brings and because it is often a ‘lonely’ disease which is so rare that you probably don’t know anyone else who has also been treated.
Nobody can really predict how much sight will return after the treatment but I do know that it takes a couple of months for the eye to heal and settle down once again. I regained almost all of my sight after 3 months but eventually, after a few years, lost it even though the tumour was far from the optic nerve. I think that was probably because the tumour was already getting large when I received treatment and there was radiation leakage which caused the damage. This was also more than 10 years ago and they weren’t actively treating what is typically called radiation retinopathy at that time, whereas they are now with some good success stories. The one thing that is pretty universal is that your eye will be extremely light-sensitive for quite a while. I wore wrap-around cocoon sunglasses over my regular glasses every time I went outside. I still do most of the time, even though the sensitivity eventually went away.
It is a significant ‘positive’ that you are in good health. We all realize that healthy people can heal faster after major medical intervention so good on you.
The people in the ocular oncology department at PMH will take care of you really well. I have utmost trust in them. They will have you return for check-ups on a regular basis and will refer you to other departments should you need additional monitoring. In the meantime, I am available if you need to chat but you must go through the Melanoma Network to initiate this process.
Stay well; stay strong; take care of yourself; and let others help you do so.
December 4, 2017 at 5:00 pm #15148AnonymousInactive
Thank you so much for your reaponse. It’s nice to know that some of my sight might return, although being cancer-free is definitely more important.
Interestingly enough, I met two other women who were being treated for this cancer…one is quite a bit younger, while the other is the same age as me (mid-seventies). Neither had sight issues before being diagnosed as I did.
Unfortunately, I think we were all in shock so didn’t exchange email addresses which is why I was so happy to find this forum. I also met a gentleman from PEI while at Princess Margaret Lodge. He had a reccurence and received a different form of treatment the second time. With all of this treatment he was still lucky enough to retain his sight.
I will try to keep you updated while I receive my laser treatment follow-up. I’m so happy to have a place to discuss things.
December 5, 2017 at 7:17 am #15150AnonymousInactive
I just want to clarify something. I had a great deal of difficulty logging in here and ended up being both Bonita and Bonita 140. I am both people. I go by the name Bonnie, but my birth certificate has me as Sheila Bonita. It’s a long story….
Just call me Bonnie,like my friends do.
December 5, 2017 at 11:24 am #15157AnonymousInactive
Hello Bonnie, Welcome to the Uveal Melanoma forum! My name is Charlene Hally and I am in charge of the Patients Programs & Outreach Coordinator here at MNC. I would love to touch base with you via email and let you know more about MNC and our free services we offer. Please contact me at firstname.lastname@example.org
hope to chat soon 🙂
December 7, 2017 at 4:08 pm #15175AnonymousInactive
I didn’t realize, until I read your reply to my note, that you need to have laser treatments. I’ve never had them, but I understand that they are very beneficial in helping your eyesight to return once more. When will you have them? Wishing you the best…..
December 7, 2017 at 4:38 pm #15178AnonymousInactive
My cirst laser treatment is tomorrow and the second is in January. It would be nice if the treatments were to improve my vision, but most important is that the cancer is taken care of and there is no spread to the liver. 🙂
December 8, 2017 at 7:54 pm #15232AnonymousInactive
I am surprised at the number of times people are checked for OM in the USA. I was told that I would have blood tests every six months and scans every year. In the US it is far more frequent. I’m sure that the Canadian way is more than enough. My melanoma is considered small and was caught early I think.
Today I went for laser treatment, but had a bleed in my eye, so it will be done in January. My vision, which is blurry right now, should improve when the bleed stops, according to Dr. Krema.
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