[NBGirl]

Hello from my 305-day-old husband & me in Eastern Canada

by NBGirl on Sun Jan 10, 2016 8:05 pm

Well actually, my husband turned 65 years old in real time last week. However, we get a kick using his new "birthdate" of March 11, 2015, when he received his stem cells during his autologous stem cell transplant. I did tell him he would have to choose which birthday we would celebrate each year. Although everyone should have cake twice a year, don't you think?

Bill was having a neck issue the winter of 2013/14. We saw our GP in early March 2014 and after x-rays, an MRI 6 weeks later, and finally a meeting with ortho surgeon, it was determined he needed his C-5 vertebrae replaced. That type of surgery generally can take 9-12 months here, but a "rush" was put on. it was hoped his surgery would be done in a 2-4 month window. And it was pretty much 4 months to the day.

A cow bone was put into his neck anchored with a plate and six tiny screws. The surgeon came out to speak with me afterwards and said it was a bit more work than he had expected. Bill had lost a fair amount of blood and was having trouble coming "out" of the surgery. He was certain his arms and legs all still had movement.

I thanked him profusely and asked when I might see my husband. The surgeon just sort of sat there for what seemed like several minutes. Then he says, "There's more, and I do not have any idea what it is." HUH? He told me he had found a tumour that he had not seen in the x-rays. It would have to be analyzed and we would go from there.

Twenty days later Bill was diagnosed with Stage III multiple myeloma, IgA. Skeletal surveys showed Swiss cheese for bones, lytic lesions in arms, legs, hip, clavicle, skull, just about everywhere.

Late September he started 16 weeks of Velcade, cyclophosphamide, and dexamethasone as well as Zometa infusions. Side effects were manageable, although not pleasant. In January 2015, 5 radiation treatments were done in the area of his C5 as precaution in case the surgeon was unable to clean the tumour.

March 11, 2015 was the BIG day. I will not go through the weeks of prep leading up to the transplant since many are all too familiar with the process. We had a wonderful team and I was allowed to stay right in the room for the entire isolation period. Having been told that Bill should expect to stay at least 30 days after the transplant, we were thrilled for him to be sprung on Day 17.

The 100 days passed very well and we are almost amazed that today is day 305. November 3rd Bill started 10 mg Revlimid daily (i.e., NOT the 21 days on / 7 days off you often hear about). It is straight ahead with his protocol. Last week's blood work shows his number creeping up a bit, but we will wait for his early February oncologist appointment to discuss any changes.

We feel blessed that so far Bill has had great response to his chemo, the transplant, and the follow up. We always are amazed when we read others discussing "get a second opinion, go to the best centres possible, check with other treatment options". Here in our little corner of Canada, it is what it is. There are no other centres, doctors, or opinions really. We are just grateful to be fortunate to have treatment available and put our trust in them.

Being Canadian, we would be interested in hearing from, and learning from the experiences of, fellow countrymen. One of our disappointments through all of this is our inability to travel outside the country. Our own private insurance has said he will not be covered and we have approached other companies that shut us down when we mention stem cell transplant. We have read about others from both Canada and the US travelling abroad, and we are perplexed by this.

All the best to everyone out there weaving their way through this very strange journey that is multiple myeloma – both patients and their care-givers. Cancer is a nasty beast, but having a rare type can be an added challenge. But isn't GREAT the advancements that are coming our way!!

[Nancy Shamanna]

Re: Hello from my 305-day-old husband & me in Eastern Canada

by Nancy Shamanna on Sun Jan 10, 2016 10:02 pm

Hello NB Girl, and welcome to the Forum. Thanks for sharing about your husband's surgery and stem cell transplant, plus chemo. I hope he does really well from hereon in, and it does sound like he has had really good care too.

I live in Alberta, and am in my 7th year now since the diagnosis, of Stage 3 myeloma. My treatments have been in Calgary at the Tom Baker Cancer Center. Since that time I have learned a lot about myeloma by reading and also attending patient education conferences, and I am in a local support group also. We have a team of doctors here in Calgary who do research as well as treat patients, so I feel that I am in a 'centre of excellence.' Patients come here for their stem cell transplants from southern Alberta, southwest Saskatchewan, and southeast British Columbia.

As far as travel insurance goes, my original plan was set up so that if you were on the same medications for a year or more, your insurance would be valid. This was true for any health issue, not just cancer. Recently my husband and I switched to a better plan through his professional association. I don't travel outside the country too much anyways, but it is nice to be able to do that for holidays sometimes.

I hope that helps, and that Bill does really well too. I have had similar treatments, but the initial induction chemo back in 2009 was Velcade / dex, and my bone building medication was Aredia, not Zometa. Zometa was not yet approved in Canada in 2009! Good luck with everything!

[Tracy J]

Re: Hello from my 305-day-old husband & me in Eastern Canada

by Tracy J on Mon Jan 11, 2016 8:07 am

Welcome to the forum! I'm sorry you need to be here, but I'm glad you found us!

[Little Monkey]

Re: Hello from my 305-day-old husband & me in Eastern Canada

by Little Monkey on Mon Jan 11, 2016 9:52 am

Hi NB Girl, welcome to the forum, unfortunately.

Chiming in from Southern Ontario;

Each province has an exception care approval system to obtain covered medical care in another country (usually the USA) if your specialist can prove the care is absolutely needed and not available in another Canadian province. Some provinces already have negotiated payment schedules with US hospitals just for that occasion (Ontario had trauma agreements with hospitals in Buffalo and eastern Michigan in case of a trauma calamity – like a major train accident).

It is not unheard of for persons living in the maritime provinces with rare or complicated illnesses to be sent here to Ontario for a second opinion; there are special myeloma clinics here in Ontario where patients are routinely sent for second opinions; some provinces have travel assistance payments for those who have to travel here for medical care.