sing this to yourselves while you are reading it to the tune of “the twelve days of Christmas”
“On the eve of Christ-mas the oncology department gave to me no chemo for toda-ay and a neutrophil count of zero point three” LOL
As OD says she doesnt know whether to go Yay!! or Booo!! The good thing is that i will be able to enjoy christmas more not suffering the usually queasiness that follows chemo. But it is a bit of a worry that my neutrophil count is so low. I have an assessment with the oncologists on Tuesday so I guess we will discuss whether or not this is going to be the best treatment for me long term – I also managed to convince them to change my chemo appointment for the 31st to later in the day so I can have a birthday lunch with the kids before chemo. Not quite how I had envisaged spending my 47th birthday but at least I’m still here to enjoy it.
Posted by jaydub26 on December 23, 2009
Am I chancing fate by posting on the 21st “Well I’m not in hospital this year for Christmas?” LOL
Those of you who have been with me throughout this journey know that last Christmas I ended up in hospital with an infection in my portacath. That was at the end of my Taxotere treatment and we had thought I was through the worst only to have my white blood cell count decide to take more of a dive than usual or more correctly not return from its usual post chemo dive of severe neutropenia. I ended up in there from the 23rd of December to the 1st of January
I had my bone scan on Wednesday last week and then my chemo last Thursday where I got my blood count results from post first round of vinorelbine/herceptin all my counts except my white cell count were slightly down but still in the normal range. My white cells of course are not behaving themselves and were lower than they normally are, especially my neutrophil count which is the one they keep there eye on the most, It was 1.25 not quite the 0.03 that it used to go to on Taxotere but just below the range that they consider appropriate for chemo treatment they usally like it to be over 2 (normal range is from 2-8) if it goes under 1 they consider it too risky and that I am too prone to infection to give me any more. We are hoping that the neutrophil count steadies at the over 1 mark otherwise this could have implications for me continueing on this chemo for a long period. I have another blood test on Wednesday in preparation for Thursday’s chemo session so it will be interesting to see what that says.
The other news from the chemo front is that last week was my first vinorelbine only chemo . The nurse used only about half the bag to flush the vinorelbine trough compared to the whole 500mls they had used the week before and when I questioned that they said it should be ok – unfortunately it seems I am one of the ones that need it flushed with more as I have had a reaction further down my vein where there is a red tracking area approximately 2cm down from the injection site that follows my vein for approx 1.5 cm and is painful. I rang the hospital and they said to make sure it got flushed more this week. We have Auckland Hospital as one of our speed dial numbers and as they show alphabetically – its the first on the list. I really dislike the fact it has to stay on there.
OD was my chaffeur and I felt so well after chemo that we went to the shopping centre on the way home. I had less queasiness on Friday than the week before but then unfortunately I developed a migraine type headache on the Saturday and was slightly nauseus. Luckily this cleared enough to pick up MD and SB (and puppy Halo) from the airport as they are up for two weeks for Christmas, we also picked up YD so she could meet them at the airport too and bought her home for the night. YD is coming home for four days over Christmas. OD is living at her R’s house the majority of the time now but will be home for Christmas Eve night as well.
I have felt good today have regained my appetite – seem to lose it a bit from Thursday to Sunday then eat normally Monday to Wednesday. Could end up losing some weight on this “chemo diet” LOL I am not on the steroids that caused weight gain last time so it will be interesting to see what happens there – Iwouldn’t mind if I lost a few kilos
It does get to me a little bit that for yet another Christmas “Gertrude” is trying to take the centre of attention but I am hoping that after chemo Christmas Eve she won’t spoil the rest of the plans too much. We are planning the cooking of the ham and turkey around the chemo timeframe on Christmas Eve and the rest of the food we are having is salady stuff that can be prepared on Christmas Day. We are having our big Christmas meal later in the day than usual as OD has been invited to her R’s family’s Christmas lunch so she will be here in the morning and then disappear for lunch and then her and R will be back for Christmas dinner at our house. We are having the extended family here for Boxing Day evening so I am hoping that I am good for both of those even if I have to rest earlier in the day.
I probably won’t update blog again until after the 29th which is when I have my next medical oncology doctors assessment and hopefully the results of my bonescan.
So to everyone Merry Christmas or Happy Holidays
Posted by jaydub26 on December 20, 2009
I am feeling quite good at the moment – I haven’t had too many side effects from the chemo as yet and the queasiness only lasted through Friday. I didn’t feel very hungry until yesterday (Monday) but did feel quite good otherwise. I am hoping that this pattern will repeat itself for the following cycles – I am also wondering how much of the queasiness was caused by the loading dose of herceptin. I am very interested to see what this weeks dose of vinorelbine on its own dose to me.
I had a quiet Friday and Saturday but Sunday saw me decorating the tree with YDs help and then helping her with wrapping her Christmas presents and organising cards for all her house mates and classmates. This is getting an easier job as she is getting much better at staying on task and she also could tell me all the names of her classmates and how to spell them when we were making the list of all the cards she had to write.
Monday I had an counselling session at the Cancer Society and I did some shopping at Newmarket and at Sylvia Park on the way home – I took the train up as it is so much more relaxing than driving and cost less money as well.
Most of the week is fairly booked up with things so I probably wont do another blog til Friday at the earliest. Today I have a waxing appointment and I am also going to pick up the ham for Christmas dinner.
Tomorrow I have to put my car in to the panel beaters to get a scratch on its front bumper fixed – someone backed into me in the carpark at a shopping centre the day I met up with L (IBC “sister”) for a chat. They were good about leaving a note on my windscreen about it. This works in well with me tomorrow because I then have my blood tests (pre-chemo for Thursday) then hop on the train to go up for my bone scan . I have to be up at Auckland Hospital at midday for them to do an injection of radio active contrast and then I have to wait around til 3 for the actual scan so I will probably take a book and go and sit in the Domain or something if it is fine. Because my nausea post CT scan, OH is picking me up after the scan.
On Thursday OD has the day off her Christmas holiday job so is taking me through for my chemo. Once I know how I am handling things and how long the weekly chemo is likely to go on for I might ask for volunteers to pick me up from chemo each Thursday to take a bit of the strain off OH. he is off for the two following chemo dates (Christmas Eve and New Years Eve)
Posted by jaydub26 on December 14, 2009
Chemo yesterday went well. The vinorelbine is administered by syringe slowly into the IV line while IV saline is also going through. Then it needs to be flushed through with 500ml saline before my herceptin which is already mixed in an IV bag is put through. It only took about 1 hour and a quarter yesterday for the whole process. So on the weeks when I am just having the vinorelbine it shouldnt take much longer than 1/2 hour -3//4 hour. The herceptin will only be every third week. I am a bit frustrated that they couldnt give me next weeks appointment while I was there as it makes it hard to organise whats happening with people accompanying me if I dont know what time it is. OH has said he’s free to take me for the next few times but its just frustrating that I dont know what time of the day it is so that he can organise to go to work before or after treatment. I am not feeling too bad today – a bit queasy but definitely not as sick as when I was on the taxotere chemo. It will be interesting to see what effect this will have on my blood counts and whether or not I will feel more tired etc as my blood counts go down. With Vinorelbine being weekly I shouldnt have the big dip of my white blood cell count that I had with taxotere but it will supress it slightly along with my red cell count and with being weekly it will be more of a constant supression rather than a big dip then right back to normal. It’s hard to tell at this stage just how I will be affected. I did manage to get to YDs end of school BBQ last night althugh with feeling slightly queasy I didnt partake of the actual BBQ. I am sort of hoping that the effects will continue being minor and once I get used to them and the limitations they put on me I will be able to carry on life as normal
Posted by jaydub26 on December 10, 2009
as Henry the IVth would say!!
Chemo starts tomorrow – ends ….who knows when!
OH accompanied me to my oncology assessment yesterday, before my first chemo tomorrow. We saw Dr H, my head oncologist and discussed the plans
I am definitely starting on the vinorelbine(navelbine) /herceptin combo. the plan is that I will have the vinorelbine(navelbine) intravenously every week and the herceptin added every three weeks. so its a bit of a pain going up to the hospital every week but it should only be for a short time each week. He says the side effects should be a lot milder than the taxotere. We discussed the trial and he said they might not start me on the trial as soon as it starts if the V/H combo is working. They would rather keep me on the V/H if it is working and swap to the trial or some other drugs if I start showing more progression on V/H. this means I could be on the V/H for quite a long time. As long as the side effects are as slight as he says I figure I will still be able to do my Uni studies etc and continue with treatment at the same time.
Yesterday’s appointment unfortunately did confirm that they think I am likely to continue to have recurrences and that is why the V/H treatment will continue as long as possible. Dr H said between that and other treatments we can hopefully control progression(cancer spreading) for quite a long time but he also said that there are no guarantees how long it will work for. This was sobering news for OH and I and in some ways I think it was harder on OH. After my little rollercoaster ride of a couple of weeks ago my mood is surprising good. I think I needed that week to recognise and deal with my feelings and now my mood is more the “ok lets get on with it again”
I have a bone scan booked for the 16th December so hopefully at my next assessment appointment in 3 weeks time I will hopefully get the all clear from that.
I will post again either tomorrow or Friday to let you know how treatment went
Posted by jaydub26 on December 8, 2009
Thanks everyone for supporting me through my mini meltdown last week – I feel much better having got it all off my chest, and can face the coming weeks of treatment.
I got my appointments yesterday in the mail – I have my pre-chemo assessment appointment with the oncologists next Tuesday and start on the chemo next Thursday.
It looks like I am going to be on the vinorelbine(navelbine)/herceptin combo for now which is a once a week IV treatment. I feel so much better now I know it’s starting after feeling in limbo for the last couple of months since they told me the cancer was back.
The good points about it being a weekly treatment are that I will be getting smaller doses at shorter intervals than my taxotere chemo which was a large dose every three weeks so hopefully the side effects while constant won’t be as strong. Reading up on navelbine there is a good chance my hair will only thin, not fall out completely which will be good although I’ll probably have to wear my hats anyway.
I haven’t got my bone scan appointment yet but will discuss that with the oncologist on Tuesday.
The bad points about it being weekly is again the side effects – we dont know how I am going to react to it and coming into Christmas I am trying to get as organised as I can before I start the chemo. My first chemo is on OH’s birthday (he’s 55 on the 10th) and with it being weekly it will also fall on Christmas Eve and New Years Eve (which is also my 47th birthday) I said facetiously to OH “oh Yay – Happy Birthday to us!”
the 10th (next Thursday) is also YDs end of year school BBQ and prizegiving so hopefully I will be well enough after chemo to attend that.
I’ll know more of the plans after my oncologist appointment on Tuesday but just knowing that it is starting is lifting a big weight off my mind. I can deal with anything as long as I have a plan!!
In the mail yesterday I also got an interview for University admission but it clashed with my oncology visit on Tuesday so they are rescheduling the interview. I am going ahead with enrolment even if I only manage to do one or two papers the first semester.
My chemo appointment on Thursday also clashed with an appointment I already had with the vascular surgery team to review my portacath scarring (and now we will also be looking at what my options are should I need IV chemo long term. If I am only on the IV chemo til February and then switching to oral Dr RB thinks they should just be able to use my left hand /wrist but if I have to have stronger doses in future we may have to look at some other sort of port). I had to ring the schedulers to confirm the chemo appointment anyway so asked if it could be changed and as it is only a short chemo needed (about an hour) they could switch me to an afternoon appointment.
So the plan is that I will catch the train up and go to the VS appointment in the morning and OH will meet me up there at lunch time in time for my chemo to start at 1.30pm he wants to be there for the whole thing as he is a bit worried about what side effects I could have with it being a new chemical.
Once we know how I am handling it, I will possibly get the train up each week but then alternate between OH and other friends and family picking me up afterwards. I like taking the train as it gives me that last vestige of independence. I don’t like relying on other people and it has been hard to accept people’s help through this. OH is the same. I promised a friend yesterday I would try harder at accepting offers of help.
Posted by jaydub26 on December 1, 2009