Other Canadian Cancer Story

[Snowysmom]

Glad to read that your DH is feeling better. Waiting and worrying is hard. Sending prayers your way.

 

[Mokat76]

Excited, I’m late to this thread tho I read your updates on Rodeo’s thread. I’m so sorry your family is going through this. I’ll keep Mike, the kids and you in my prayers as you go forward. Cancer sucks.

 

[lisaviolet]

Thank you for the update. Thinking of you all. Love sent.

 

[lisaviolet]

Thinking of you. Hope the latest scan brought some positive news for Mike - for you all.

 

[Someluck]

Thinking of your family and sending positive thoughts for all of you. I hope you find hope and peace in each day and comfort in loving friends and family.

 

[leebee]

Remembering that Mike's next scan was scheduled for 7/20, I'm hoping that no news is good news! Know that we are all still here, still thinking of you guys.

 

[Sarah'sMomfrom PA]

Here's hoping that no news is "good news" because I keep looking for excited family's thread and commented to Rodeo that I had not seen where she posted in awhile. You remain in my thoughts and prayers and positive thoughts are being sent your way from Pennsylvania. Hang in there as this disease is as difficult on the loved one's as on the patient (my mother died of colon cancer at 61). Hugs and please keep us updated on Mike's progress and we will keep you and Mike and family in our prayers.

 

[excited family]

Thank you so much for all of your kind words and thoughts. I have been meaning to post an update but I have been having eye/ sinus?? problems so I have been avoiding my computer as much as possible.
Mike had his scan on July 20th and we saw a doctor at the local cancer clinic on Friday, 27th July to get the results. It was all good news. Everything had shrunk and the doctor was very happy. Mike is supposedly one of the only patients, if not the only patient, taking this targeted therapy at our local clinic. It takes longer for drugs to get approved in Canada, so I think it is less than a year since Mike's drug was approved for use here. The doctor actually seemed surprised that it was working so well so fast.

The drug will stop working at some point and then we will have to come up with an alternate treatment. How long that will be is anyone's guess. Could be weeks or it could be years. So the next scan will be sometime in October. The bad part is that one of the side effects is getting pretty bad. The drug can cause a pimple like rash that itches and it is getting pretty bad on Mike's head, shoulders and neck. So much so that the doctor has lowered the dosage of his afatinib from 40 mg to 30 mg. This is a common practice in countries where the drug has been used longer. If the side effects are too much, then lower the dosage. Fortunately studies have shown that it shouldn't affect how long the drug works or how well it controls the cancer.

Mike was given the all clear to travel but with dire warnings about leaving the country! Possibly not able to get travel insurance. The doctor is especially concerned about traveling to the States. He knows patients who have been financially ruined due to getting sick while on vacation in the States. While he doesn't expect the cancer to suddenly cause problems, it is the increased chance of getting infections that concerns him. Mike's lung is now more susceptible to things like pneumonia. He was also talking about blood clots being a possibility. Mike feels fine now but is at a greater risk of catching whatever is floating around a plane!

Mike is also supposed to avoid sun exposure because of the rash. So we are stuck as to what to do in regards to travel. On one hand we want to travel while he feels good knowing that it may be the last chance ever. On the other hand it is all very scary. There is also the strange fact that I, and possibly my daughters, are reacting to what Mike is taking. I have already had to set up his soap/ towel and our soap/ towel which is getting very confusing. I now also clean the taps and handles after Mike goes to work. On the weekends my rashes get worse and I can only assume that it is because things are not wiped off each day. I have kept a food diary for years in an attempt to figure out what I react to. I have always written down what I do and use. Within the past month I have realized that I need to keep track of what other people do as well. Very worried about sharing a hotel room where I don't have control over cleaning and towels, etc.

I feel like such a pathetic loser. I am supposed to be looking after Mike but I have never been as reactive in my life. I am having trouble dealing with underwear! Pathetic.

Mike is dealing with things really well. He claims that he forgets he has cancer sometimes. So that must be good. So now we just wait, try to figure out a vacation, find latex free underwear!!!!! I am ecstatic that the drug is working so well but I feel like I am waiting for things to turn bad. I want to travel while we can and enjoy this bonus time but I am scared stiff about what could go wrong. Hopefully i will update soon with vacation plans. I wish Mike had been cleared to travel sooner since my son is at university in September and I feel badly traveling without him. In summary, Mike feels great but has an annoying rash. Apologies for my rambling post. Thanks again to everyone for thinking of us. It helps so much.

 

[Southernmiss]

Thank you so much for all of your kind words and thoughts. I have been meaning to post an update but I have been having eye/ sinus?? problems so I have been avoiding my computer as much as possible.
Mike had his scan on July 20th and we saw a doctor at the local cancer clinic on Friday, 27th July to get the results. It was all good news. Everything had shrunk and the doctor was very happy. Mike is supposedly one of the only patients, if not the only patient, taking this targeted therapy at our local clinic. It takes longer for drugs to get approved in Canada, so I think it is less than a year since Mike's drug was approved for use here. The doctor actually seemed surprised that it was working so well so fast.

The drug will stop working at some point and then we will have to come up with an alternate treatment. How long that will be is anyone's guess. Could be weeks or it could be years. So the next scan will be sometime in October. The bad part is that one of the side effects is getting pretty bad. The drug can cause a pimple like rash that itches and it is getting pretty bad on Mike's head, shoulders and neck. So much so that the doctor has lowered the dosage of his afatinib from 40 mg to 30 mg. This is a common practice in countries where the drug has been used longer. If the side effects are too much, then lower the dosage. Fortunately studies have shown that it shouldn't affect how long the drug works or how well it controls the cancer.

Mike was given the all clear to travel but with dire warnings about leaving the country! Possibly not able to get travel insurance. The doctor is especially concerned about traveling to the States. He knows patients who have been financially ruined due to getting sick while on vacation in the States. While he doesn't expect the cancer to suddenly cause problems, it is the increased chance of getting infections that concerns him. Mike's lung is now more susceptible to things like pneumonia. He was also talking about blood clots being a possibility. Mike feels fine now but is at a greater risk of catching whatever is floating around a plane!

Mike is also supposed to avoid sun exposure because of the rash. So we are stuck as to what to do in regards to travel. On one hand we want to travel while he feels good knowing that it may be the last chance ever. On the other hand it is all very scary. There is also the strange fact that I, and possibly my daughters, are reacting to what Mike is taking. I have already had to set up his soap/ towel and our soap/ towel which is getting very confusing. I now also clean the taps and handles after Mike goes to work. On the weekends my rashes get worse and I can only assume that it is because things are not wiped off each day. I have kept a food diary for years in an attempt to figure out what I react to. I have always written down what I do and use. Within the past month I have realized that I need to keep track of what other people do as well. Very worried about sharing a hotel room where I don't have control over cleaning and towels, etc.

I feel like such a pathetic loser. I am supposed to be looking after Mike but I have never been as reactive in my life. I am having trouble dealing with underwear! Pathetic.

Mike is dealing with things really well. He claims that he forgets he has cancer sometimes. So that must be good. So now we just wait, try to figure out a vacation, find latex free underwear!!!!! I am ecstatic that the drug is working so well but I feel like I am waiting for things to turn bad. I want to travel while we can and enjoy this bonus time but I am scared stiff about what could go wrong. Hopefully i will update soon with vacation plans. I wish Mike had been cleared to travel sooner since my son is at university in September and I feel badly traveling without him. In summary, Mike feels great but has an annoying rash. Apologies for my rambling post. Thanks again to everyone for thinking of us. It helps so much.

Glad to see your post.

Bonus time has to be a huge blessing to you all.

Navigating the side effects for Mike and your family is a challenge I am sure.

Pixie dust for continued progress and good news!

 

[mamamary]

Glad to read the good news. Thank you for posting.

 

[PollyannaMom]

Thanks for the update, and congrats on the good results! I hope they figure out the rash and your reaction soon.

 

[ronandannette]

Hi @excited family - thanks for what seems like as good an update as could possibly be, under the circumstances.

I just wanted to ask if either you or Mike have travel insurance included in your benefits through work? If so, that policy will still be in effect regardless of his health condition. Check your policy for specific details but if you're covered, that will "take a load off" in terms of your holiday plans.

 

[lisaviolet]

Thinking of you. Hope you have been able to get away. Ingle insurance has a few policies that cover pre-existing conditions, which is paramount to more relaxing travels in these situations.

Hope Mike is doing okay. Thinking of you all.

 

[lisaviolet]

Hi,

You are on my mind excited family. Hope everything is going well with Mike.

Anf hopefully you all had the chance to get away somewhere.

Happy Thanksgiving.

 

[Earstou]

I've been wondering how you are doing, also, excited family.
I mentioned in the other thread that we have been on the same roller coaster ride. So many ups and downs (hope for surgery, then the aborted surgery with terminal diagnosis, hope for a wonder drug, then told no wonder drug. etc.). Things are going okay for now, the cancer is stabilized, but it will eventually overtake DH. So I know what you mean when you say "but I feel like I am waiting for things to turn bad". It's like a heavy anvil hanging over our heads, and one day that rope holding the anvil will break. I don't always feel this way, but we've had dreary weather lately, I need some sunshine in my life!!
Thankfully DH feels good (with lots of help from his palliative care doctor) and has a much cheerier attitude than I do!
We were able to go to Europe for a 3 week river cruise! I was scared, especially worried about him catching something during the plane ride, but everything went well. The river cruise worked well too, only had to unpack once, and if Dh didn't feel well, he could just stay on the boat and sleep while I did the day's excursion. If time allows, we will do another one next year.
His oncologist at first told us we couldn't travel to Europe. When he started visiting the palliative care doctor, she felt he could travel, that it was important for his well-being, and she discussed this with the oncologist, who finally agreed. We did make sure we had good travel insurance!
Take care! You are doing a good job taking care of Mike!