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  • leggo
    leggo Member Posts: 3,293
    edited September 2009

    Konokat, here is where we are failing in Sask. Neulasta is not covered.

  • konakat
    konakat Member Posts: 6,085
    edited August 2009

    It's crazy that something like Neulasta isn't covered -- it's critical to keep infection away, blood counts healthy.  You'd think the gov't would realize it is more cost effective to keep someone healthy with Neulasta than risk days in the hospital with an infection or pneumonia.  But I guess with supplemental insurance or programs like Trillium in Ont you can get help covering the cost.  I hope!

    This is one reason I would be happy to pay more taxes to get all prescriptions covered.  And dental...

  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited August 2009

    Well, here's a little known secret!  My onc prescribed Neupogen and IF my supplemental insurance wasn't going to cover the cost, the visiting homecare nurse would issue me with a special "card" which would allow me to get the Rx free of charge.......My supp insurance did cover the cost ($2K+) between each tx., and if my dh hadn't learned how to give me the shots, the visiting nurse would have come every day.   Hmmmmm...how's that for Canadian healthcare?

    I wonder, though, why some oncs prescribe neupogen, while others prefer neulasta.

  • hrf
    hrf Member Posts: 3,225
    edited August 2009
    I gave myself the Neulasta shot at home 24 hours after chemo. It's not required to be done in a hospital. If I had trouble with it they would have arranged for a home care nurse to come to my house to do it. Last time I did chemo I did the Neupogen shots.....I think I did 10 shots each cycle at $250 per shot. So the cost is essentially the same. But it was easier to do just one shot of Neulasta than the 10 of Neupogen. Neustasa is the second generation drug. I'm sure Trillium would help anyone who didn't have supplemental insurance regardless of the staging designation. At Sunnybrook, they now have a special person designated to help with drug related costs for patients. Konkat, do you know which hospital and doctor you will be with when you return? I expect that someone in the social services department will be able to help you navigate your way through Trillium &/or other support services to help pay for the medications. You might want to make a connection even before you return.
  • leggo
    leggo Member Posts: 3,293
    edited September 2009

    Linda, that's good to know. Because I never needed it, I'm not sure how I would have gone about getting it. If your supplemental plan wouldn't have picked up the cost and you would have gotten it from homecare, who would have picked up the cost? Also, I'm starting to re-think my statement that its' not covered in Sask. Maybe it just wasn't covered for me.

  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited August 2009
    Gracie, my suspicion is that there's a "secret" Ministry of Health fund that can be accessed by Homecare.  I believe most hospitals have a discretionary line in their budgets to cover unexpected patient care costs, and no doubt Homecare does as well.  But, being discretionary, it's definitely not talked aboutWink.
  • pip57
    pip57 Member Posts: 12,401
    edited August 2009

    I am always asked when I live the hospital whether or not I have extra insurance.  When I tell them that I do not, then they tell me about the home care program.  I have learned to keep them coming once a week just so I can keep the drug plan.

  • leggo
    leggo Member Posts: 3,293
    edited September 2009

    That makes sense. There was a time about a year ago that I was bedridden from my bone mets and I got everything I needed at home, including a hospital bed and walker. I don't have supplemental insurance so I wondered where it all came from. My husband took care of it all and I just asked him how much he paid for all that stuff. Nothing apparantly, it was all arranged between my family doctor and homecare. Could I really ask for more? We live in a GREAT country!

    Edited to add: On days that I was going to be home alone, they also had homecare swing by to check on me. How can the U.S. possibly think we ration our care.

  • konakat
    konakat Member Posts: 6,085
    edited August 2009

    That's good to know about Home Care.

    Re. Neulasta and Neupogen -- if you get chemo every week you can't have neulasta -- it needs 2 weeks between treatments.  Neupogen you can use for any type of cycle.

    HRF -- I'll be in Ottawa -- the Ottawa Cancer Center.  I don't know what onc -- I haven't gotten that far in arranging things.  I did find out though, they only accept a referral from my Ottawa family doc, they won't take a referral from my Boston onc.  But my Ottawa doc is cool, I'll just have to send her my images, med records and she'll set it up for me for when I return.  If worse comes to worse, I can get my sister to speak to her -- they went to med school together and my sister is my doc's doc so they have a connection. Kinda weird, but helpful.  :-)

    And that is a good idea to get the ball rolling before I return -- at least know what's available, read and understand info about programs, etc.  Thanks!!

    And yes, Canada is a great, beautiful country!  We are very fortunate!

  • pip57
    pip57 Member Posts: 12,401
    edited August 2009

    It sounds like Neulasta and Neupogen are being given more often now.  Are there studies showing that it is  better to use it?  I had pretty heavy chemo and was fine without it, so I am just wondering...

  • hrf
    hrf Member Posts: 3,225
    edited August 2009

    PIP, the Neulasta and Neupogen stimulate the growth of white blood cells so that we are less susceptible to infection during chemo. There are still days when the white count is low but not as many days as there would be without the Neulasta. I think it is part of the TC protocol now.

  • leggo
    leggo Member Posts: 3,293
    edited September 2009

    I'll share what my onc said about neupogen/neulasta....and please keep in mind this is only his opinion, so if you've used it...don't freak out. I was ridiculously ill after each taxotere treatment so I asked about it. He told me (at that time), that they have not yet studied whether or not it also stimulates the acceleration of tumor cells, so he prefers not to use it unless absolutely necessary. He much preferred I suck up the week of feeling like crap and let my body recover on it's own. He kind of compared it to antibiotic use for everyday infections. Sooner or later the antibiotics stop working because your body gets used to it. He told me, particularly in a metastatic setting, he will not prescribe it unless counts don't rise on their own within 5 days. Whether he is on the right track or not, I have no idea, but it did make sense to me. Perhaps that is why it is/was not used as often.

  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited August 2009

    You know, there's no way of knowing if you're going to need the WC boost following a tx.  Since I seemed to have a very strong immune system (no colds, flu  etc. in about 6 years) my onc said I'd probably get through tx okay.  Hah!  After first FEC, my count was lower than normal but we proceeded with tx #2 anyhow.  That's when she prescribed neupogen (10 shots).  After the second FEC she upped the neupogen to 12 shots because my count was still on the low side.  So that continued thru taxotere as well -- and wouldn't you know that neupogen comes in a package of 10.....!

    But, the good news is -- I didn't come down with any infections at all during chemo -- just the usual se's.  And those shots in the tummy are but a memory.......Kiss

    PiP -- so glad to know Bailey's home and -- we hope -- feeling much better. Certainly your vet's bank account isTongue out

  • pip57
    pip57 Member Posts: 12,401
    edited August 2009

    My daughter received it (known as GCSF) in 1996 during her tx.  It was basically experimental then.

    Gracie, I didn't want to ruffle feathers either, but my onc also was not convinced about it yet. I don't know how low my counts got between tx.  My blood was only checked just before the next tx to make sure I was okay to go ahead.  

    I just wondered if it is now considered standard or is it more or less a personal thing with your onc's experience?  Have they settled the issues that some of the oncs apparently have with it? 

  • leggo
    leggo Member Posts: 3,293
    edited September 2009

    Let's compare if you don't mind. I also didn't get my blood checked until the next one. How bad did you feel? I called the onc after the second treatment because I couldn't lift my head off the pillow, my legs couldn't hold me up, had thrush, and my muscles were screaming. He said I'd feel better after a few days, when my counts went back up, and I really did. I felt waaaayyyyy better. I do get the feeling that it is a personal thing with oncs. Two in my clinic use it routinely, the others, about six or so, shy away from it.

  • pip57
    pip57 Member Posts: 12,401
    edited August 2009

    My symptoms were just like yours.  I was careful in those 'down' days to avoid going anywhere (that was easy, didn't feel like it!) and washed my hands, a lot.  My dh wouldn't allow anyone who might be harboring any illness to come near our home.  He took great care to make sure that all my food was thoroughly washed.  

    I can see if you need to, and actually can, (I sure couldn't) continue to work that you would need some protection.  And if you have young children around it would be helpful. 

    It seems like the use of neulasta is very much up to the onc.  I suspect that in the US, there are incentives from the drug companies to use it.  It appears to be much the same with tests like tumour markers.    

  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited August 2009

    With FEC, I felt "fluish" for the first 3-4 days, then when I felt better, I had significant fatigue until a few days prior to the nex tx.  With taxotere, I really felt fluish most of the time -- plus having no taste buds, thrush and I don't remember what else -- I really, really hated TAX.Yell

    Neupogen doesn't get rid of the fatigue -- it only provides protection against infection, which the white cells are there to fight.  Low red cell count, on the other hand, is really the cause of the fatigue and, other than a blood transfusion, there isn't much we can do about that -- except sleep alotUndecided.

  • pip57
    pip57 Member Posts: 12,401
    edited August 2009

    And eat watermelon!

  • leggo
    leggo Member Posts: 3,293
    edited September 2009

    But isn't fatigue one of the myriad of side effects of a low white cell count?

  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited August 2009

    I think fatigue is more the s/e of chemo, which causes a reduction in both red and white cells.

  • mke
    mke Member Posts: 584
    edited August 2009

    I had neulasta and had no problems for the first 3 dose dense AC, but the 4th one didn't seem to work and I ended up in the hospital with a fever, very low white cell count and quite anemic.  I had several days of IV antibiotics and a couple transfusions.  There was speculation that either that last dose was a bad batch or there was something wrong with the injection.  Then I started having terrible bone pains and switched to neupogen as they thought the lower doses might be easier on me.   I think it was, but I crashed again and ended up with more IV antibiotics and transfusions.

    I certainly wasn't in a sterile environment especially for the first part of chemo - maybe that played a role.  I always thought my immune system was sturdy enough, rarely sick and all.  Because it was my second round of cancer and an agressive type my onc warned me that I would be treated agressively.   And they did, there was never any question of postponing a treatment.

  • hrf
    hrf Member Posts: 3,225
    edited August 2009

    My experience is similar to what lindasa is saying. During my first dx and was on the FEC, I did get sick and had infections. I also did require a blood transfusion at one point. So, I had to inject Neupogen for the white blood count and Epogen for the red blood count. I was fatigued because of low red blood count. But I got sick because of low white blood. I managed to keep my red blood count up enough this time but did take the Neulasta for white blood and also stayed away from crowds or any situation where I could be susceptible to infection. I also had to inject Fragmin both times in order to avoid blood clots. My abdomen was a pin cushion.

  • leggo
    leggo Member Posts: 3,293
    edited September 2009

    Thank you ladies, for all the info on Neulasta/Neupogen. It's good to have all the info in case I need it someday.

  • leggo
    leggo Member Posts: 3,293
    edited September 2009

    Just thought I'd share a little something I've recently discovered. My husband's vision benefits only cover $250.00 per annum. A good portion of that is taken up by an eye exam so I really didn't want to pay $500.00 for glasses and $200.00 for contacts again this year. I thought I'd take a chance and order both from the internet. (Can't mention the name of the companies as per board rules). My "really nice" glasses cost me $30.00, shipping included and the contacts came to about $10.00/box. I had some concerns, but I'm also lucky enough to be friends with an optician, who had a look at them and told me they wouldn't have been any better, had I ordered them from her fancy schmancy store.

  • hrf
    hrf Member Posts: 3,225
    edited August 2009

    Good work, gracie!!!!! My plan allows $500 every 2 years - it just got raised. I generally had been paying for some of the expense myself. Good to know there are options.

  • bluedahlia
    bluedahlia Member Posts: 6,944
    edited August 2009

    If you're taking tamoxifen, arimidex, etc., you can get a referral from your GP, and your eye exam will be covered under ohip.

  • hrf
    hrf Member Posts: 3,225
    edited August 2009

    bluedahlia ... thank you for that information. I had no idea. Interestingly, my vision has improved significantly with chemo. I don't expect it to last but I'm enjoying not needing glasses or contact lenses for distance.

  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited August 2009

    Blue, thanks for that info.  I'm seeing my optometrist every 6 months because of an issue she wants to keep an eye on (pun unintended!!!).

  • CherrylH
    CherrylH Member Posts: 1,077
    edited August 2009

    Dear Blue and all you ladies north of the border,

    I want to thank you for your input on Coonie's thread. I have not posted much there because, for one thing, I am still recovering from dealing with some of those people during the campaign last year. It takes too much emotional energy to fight people set in their ways and not willing to hear another point of view. I share you fears of where   this country is going, and not because the Dems are in the majority (I'm one of the them) but because of the narrow vision of so many vocal elements. Yes, I am a coward posting here and not on the healthcare thread and if Shiryley finds this post, I'm in deep do--do. But I'm taking my chances and thanking you for your sincere and thoughtful imput.

    Cherryl

  • hrf
    hrf Member Posts: 3,225
    edited August 2009

    Cherryl, we care about you folks and it's painful to see so many of our American bc sisters struggling to find the money to get proper treatment. We wish you the best in your struggle to achieve universal health care. I think Obama is very smart and is a courageous man to tackle the health care issue. I do hope he is successful. Not only are you our neighbour but the US is Canada's largest trading partner so we are affected by what goes on in your country. I also think the current American debate is bringing some of our right wing extremists out of the closet so the talk heats up here too. While our system is not perfect, there is an incredible peace of mind when you doesn't have to worry about whether or not you can pay for your treatment when you are facing serious disease and most everyone is treated in a timely manner. (I say "most" because we do have a Canadian or two on these boards who say they haven't been - but I personally don't know anyone with a complaint)

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