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Surgery scheduled . . . abnormal EKG . . .

11 May

I have a new surgery date – May 17th. I haven’t written because I have been trying to get everything done in time for the new date – take care of pending things, arrange for caretakers post surgery (I will need to have a person stay with me for a week after surgery), dog care, cleaning, and soon – some cooking (probably this weekend – I eat organic food as much as possible – so I plan on preparing some meals ahead and freezing these so as to make everything easier post-op).

Yesterday was taken up with phone calls – literally 6 hours of my day yesterday was spent on the phone with medical providers. At one time, in an effort to speed things up – I was on two phones – on hold with UCLA Oncology and on hold with Hoag. It proved to save me a few minutes, I guess. Although, I am not sure that the in-stereo-hold-music was worth it.

So now I have new surgery date, but, it may not go . . . my pre-op EKG came back abnormal. So, now it is off to see a cardiologist – only my cardiologist is not available until . . . yep, you guessed it . . . May 17th. Charming.

Instead, I have an appointment with a nurse practitioner who is board certified to do pre-op clearances in cardiology. I am not too keen on this option. But, it is what it is.

The drug herceptin has cardiopathic potential – meaning that it can cause damage to the heart. I was on herceptin infusions for over a year. It was something I was worried about before I embarked on my treatment plan last year. But, while there is a risk that herceptin will damage the heart – the risk of not taking herceptin is certain – without herceptin the cancer would go unchecked, unstopped by even the most drastic of chemotherapy protocols. So, really, there was no choice.

While on herceptin a patient is monitored by a cardiologist. I have echocardiograms about every three months. So far these have all come back normal. I am waiting on the results from the most recent echo (I had this test last week). So, hopefully everything will turn out fine.

When I had the EKG last week, it was on the same day the I got lost trying to park, ugh. I was very distressed by the time I found my way to the pre-admission screening at Hoag, so maybe that is why the EKG was abnormal? I don’t know much about this stuff. And, I am hoping that I do not have to learn much about it either! 🙂

So, maybe I will have surgery on the 17th and maybe it will be postponed.

Hopefully everything will be fine.

Please say some prayers, I really appreciate it.

Love and peace,

Lisa

Herceptin weekend ended well . . .

15 Feb

Friday was my Herceptin Treatment – of which I only have a few more left YAY! 🙂

This weekend my parents stayed with me (from Thursday through Sunday morning) taking me to my Herceptin treatment on Friday and then taking care of me through the worst of the Herceptin aftermath.

I never noticed that the Herceptin caused any side effects before as I was always either getting it during chemotherapy, post surgery or during radiation. And, I just was not able to distinguish the feeling sick and weak from the other treatments. But, now that I have completed the chemo and radiation and have recovered from those treatments, the Herceptin weekends stand out for certain. It is nothing compared to a chemo + Herceptin weekend, but it isn’t a lot of fun. In any case, it is only temporary and I got through one more this past weekend with the amazing help of my parents.

During the past two Herceptin treatments I was alone and just thought I was having a really bad flu. But, being alone, I didn’t eat and the recovery was much longer. However, thanks to my parents staying with me and looking after me and making sure I ate, I recovered in record time – even in time to have a Valentine’s Day. I had a wonderful day and evening on Sunday. Sunday during the day I had brunch with my parents and brother Paul, his wife Marcella and their boy. With the weather being so nice, we ate outdoors. It was really a great day. Then in the evening, after a bit of rest, I went out (as in at night)!!! I haven’t had much energy for that until just recently. Anyway, I had a wonderful evening with a very special friend and hearing live music, dancing a little (but mostly, watching the real dancers dance to a live swing band – in fact, one of my friends is the bass player for this band). It was just a very special Valentine’s Day. And, if you’ve read a couple of posts back, you’ll know that last year’s was not so easy.

I guess anything would be an improvement over last year. But, this past Sunday was a very special day for me. So thank you for everyone who I got to see and spend time with – you made it such a wonderful day and night). And, of course, without my parents having been here since Thursday, I wouldn’t have even been up to doing really anything on Sunday – they take far better care of me than I am able to myself post Herceptin.

I have a couple of doctor’s appointments this week and more physical therapy – see, it still is like a full time job 🙂 I have an appointment with my surgeon (it is just a follow up type of thing from my last surgery) and then on Wednesday I see my radiation oncologist for the first time after completing radiation treatment this past December, 22nd. Again, another follow up to see how I am doing.

Well, that is it for now. Please continue to keep me in your prayers and to send positive thoughts out my way. And, always feel free to leave me a comment on here or to drop me a line. It does me a lot of good to hear from friends.

Peace and Love,

L.

Days & Nights Are Upside Down

11 Feb

I am still trying to turn my days back into days and my nights back into nights. Although I have been off of the Tamoxifen since Sunday night (it is now Wednesday) night, I am still having trouble with sleep getting to sleep, staying asleep – sleeping at all in fact. So, I hope that tonight will be a better night for me. Especially since tomorrow is another Herceptin Treatment. These knock me out pretty good – I get extremely tired and then usually spend the weekend feeling like I have the flu (aches, fevers – that kind of stuff). But, here’s to hoping the treatment does not cause these side effects this time around.

Either way, I will get through it.

I feel good about the fact that my oncologist at UCLA is so responsive – I called with complaints of the side effects I have from the tamoxifen and she immediately said to stop taking it for two weeks and to have me come in after the two weeks (have an appointment already) and then we will discuss other options than Tamoxifen – or the possibility of resuming Tamoxifen with the assumption that my body will eventually adjust to it.

I know that she wants to have me off of the drug to make certain that the side effects that I have been having (dizziness, nausea, unusual pains etc.) are from the drug and not from some other cause.

So, that is good. I am pretty confident that the side effects are in fact from the drug. i hope so. If not, then it is a battery of other tests – one which  I can not even have yet – a Brain MRI. So say some prayers for me on that. I am keeping my fingers crossed that all of the side effects cease (most have diminished significanyly since I have stopped taking the drug).  Well, wish me luck for tomorrow’s treatment!

Lisa

VICTORY!!!

3 Feb

I’m telling you all – this cancer thing is literally a full time job. UGH! I am doing pretty well actually. But, today was just one of those days where I had to spend a bunch of time on the phone, navigating, pleading, arguing etc. with my insurance provider (or, actually the branch of it that I am in – Greater Newport Physican’s Group – GNP) and the medical facility where I receive treatment (and have been receiving treatment since April 2nd, 2009, my first day of chemotherapy).

Anyway, I got a call from GNP this morning telling me that they believed that everything was worked out, (see today’s earlier post: “Now What?”),  but, that I would hear the final word from the treating facility. Anyway, I finally got my answer – that I WOULD be able to continue my needed treatment at their facility at the end of the business day today.

You can be sure there was talk amongst lawyers today on this one. I may sue them, I may not. But, most certainly I have grounds to do so. But, right now my focus is and must be on being cured. So, after hearing the crappy news this am that my former doctor was not going to allow me to continue treatment at their facility, I had to go through a ton of hoops, make a bunch of calls, sit around and wait by the phone (skip my physical therapy treatment as well – because God forbid I should miss their call and then where would I be) and just deal with stupidity all day long.

But, Dr. Hurvitz up at UCLA told me something a long time ago that yet again gave me the courage to go after these people and fight for what I am supposed to have – she said: “Lisa, you are in the driver’s seat with them.” (She told me this after I had told her of what had happened – my near death experience caused by their negligence, the inaccurate information I was given by my doctor, his refusal to even read my file, it is far too much detail for today – and, besides,  it is all covered in this blog – if you care to read all about it, just go back to April and start there) 🙂

She said that I was in the driver’s seat because what they had done and what they have failed to do for me was “complete malpractice” (the anaphylactic shock that was caused during my second chemo from their prescribing the wrong premedications prior to my treatment, etc.)

So, why would I want to stay there, you might ask? I don’t have to see the doctors there and the doctors do not administer the treatment. The nursing staff does. And, one nurse in particular – Dawn, is the only person who can consistently get in an IV line. She is also, just a saint and absolutely saved my life – truly – she did.

I really would not be here today if it were not for Dawn. There are other excellent nurses there but, Dawn is sort of my angel. I was seconds away from not coming out of anaphylactic shock – I knew I was dying, I couldn’t breathe, and I felt everything in my body just collapsing in on me – by far the scariest day of my life. I could not speak, I could not alert anyone to my situation – it all happened so incredibly fast. But, to my incredible, incredible great fortune, a woman who was there visiting her mom (and happened to be a cancer nurse) walked into the room as I was going through this and immediately grabbed Dawn. Dawn acted so incredibly fast and truly saved my life. So, you might say there is a bond there. The treatment that I receive now is not chemo, but it still requires an IV and it still presents some potential risks (I am just a tough patient – I react to things in ways that many don’t). So, I feel most comfortable having Dawn.

It will probably be a little weird returning there now that everyone knows how I feel about my former doctor – but so what. I felt it last time. And, last time I was there, Dr. Burtzo already knew anyway – it was clear from the fact that every time he had to go to the nurses station – he would walk all the way around to avoid me – kind of amusing actually. He usually comes by the treatment area and says something stupid to us (the patients connected up to IV’s). An example of one of his stupid sayings is “Oh, look at you? You’ve got the best seat in the house!” – referring to anyone who is hooked up, getting hours of chemo in a particular chair that has a view of the outdoors. He says the same thing every time. I wonder if he has ever had an original thought. But, not last time 🙂  He was quite noticeably over on the other side and walked all the way around to make that happen. Well, I guess he will be getting a little extra exercise on my treatment days. Ha, ha, ha.

Trust me, I didn’t, and won’t, miss him one bit 🙂

So today was another day hijacked by cancer, but at least I won. I just wish I didn’t have to fight so hard for it. It is tiring and all-consuming. I had other plans for today. But, for now at least, it looks like we are back on track.

So hopefully tomorrow I can get to today’s planned “to do list”.

Much love to all.

L.

Now what?

3 Feb

I have been officially fired by my oncologist (not the doctor up at UCLA), but the local oncologist that I have been unhappily seeing this past year or so. So, not a big deal – or so one would think. He called me yesterday, left me a phone message saying that he was going to send me a list of new doctors to choose from (there is only one other oncologist on my plan) and canceled my Herceptin treatment that is scheduled for this upcoming February 12. He called yesterday – on the 2nd of February – and said I had three weeks to get in my next treatment, to make arrangements with a new doctor to do so etc and wished me the best of luck.

Okay, well, I don’t know about Dr. Burtzo, but my math – from the 2nd to the 12th would be 10 days, not 21. So, I now have 9 days to arrange for the Herceptin treatment that I must have every 21 days.

Also, I have to have a local oncologist who will co-sign for my oncologist up at UCLA’s requests (for testing and treatment that I am to have locally). But, somehow or another, my case manager forwarded an email that I sent to him (the the case manager  about my history of poor care with this doctor and some of the problems that the facility has done wrong) to the facility where I get treatment and to Dr. Burtzo.

After that had happened, Dr. Burtzo called, said he’d read my email (which was not intended for him), cancelled my upcoming treatment and said I needed to seek treatment elsewhere . . . as if I can just walk down the street and ask someone to give me Herceptin – AND – as if I can make these arrangements within 9 days. And, I so need this stress right now.

Well, I am hoping it will work out. What I was told originally was that the medical director of the facility, who is very well known in his field and has a good reputation and is Dr. Burtzo’s boss) was going to “take over my case” and “co-sign” for my treatment (as in, he would authorize whatever Dr. Hurvitz up at UCLA requests so that my treatment can continue locally).  But, now I am unsure as to whether this is happening or not. I am really worried about it as I certainly can not delay my Herceptin treatment and, unfortunately, I can not have it just anywhere. They have trouble getting an IV with me, so there is a nurse (Dawn, who literally saved my life last year – another story) who knows my body and how to get in an IV – in most cases in one attempt.

I am what they call a “hard stick” – small veins, overused veins. I have had to go home on a scheduled Herceptin treatment day after different nurses trying five times to get an IV in and simply sent me home to have me come back on another day. So, it is ME, not them.

But, Dawn, my nurse at the center where I have been getting my treatment, who knows me and has the best probability of successfully getting in an IV, is really the only person I am comfortable with doing this.

So, now I wait to hear back (I have made several calls this morning on this) as to whether they are going to put me back on the schedule for my next treatment or drop me. I can’t imagine it would be in their best interest to drop me (despite my displeasure with my doctor there). And, since it seems to be all about their (the doctor’s, the owner of the clinic, the clinic’s medical director) best interest – – i.e., not getting sued – – I would think that they would take care of this, co-sign for my care and allow me to continue the Herceptin locally with someone who know what they are doing.

Well, wish me luck, say some prayers they do the right thing.

L.

What I would give for a cup of coffee . . .

11 Nov

I have not had coffee in about six months. Eliminating coffee was just part of my change towards a healthier diet. But then, after reading that it reduces the effectiveness of Herceptin (the mono-clonal antibody that kills the kind of cancer I have), well, let’s just say I was relieved about having eliminating caffeine a few months earlier. 

My oncologist never told me to avoid caffeine, and studies clearly indicate that regular use of caffeine makes Herceptin less effective. He still doesn’t tell his patient’s this even after I brought the UCLA study to his attention.

It is awful to see women coming into treatment  carrying some kind of Venti coffee drink. Granted, not all of the women treated there are getting herceptin,but some are . . . and doing so with caffeine in hand.

Anyway, of all the things I have given up to improve my diet and health – coffee has been the toughest. I used to make a cup of coffee early in the morning, take it to the park across from me and read the paper (and, of course my 15 year old puppy, Molly, would accompany me). Somehow taking the paper over to the park without a cup of coffee (and without my dog) just doesn’t have quite the same appeal.

I look forward r0  having a cup again at some point – probably in late May or June.  But, until then, I will just have to wait. It is no big deal really. But, today is one of thoe foggy mornings where a cup of coffee would be really nice. 🙂

Sorry been too groggy to be bloggy . . .

29 Aug

This past week has been a series of doctors appointments, pretty much one every day this past week. Also, had my Herceptin treatment (finally) this past Monday. It was my first three week dose (prior to now I have gone weekly for Herceptin, but now I only have to go every three weeks for a triple dose). The Herceptin treatment made me sick (they ran it over one hour, it is supposed to, at least UCLA does it this way, be run over 1 1/2 hours). I have always had to have my weekly treatments ran over an hour instead of 30 minutes (the usual infusion time for a weekly dose). Otherwise, I have reactions and get sick after wards. So I figured that when I went to the “once every three weeks dose” that is usually done in 90 minutes, that mine would be done in the normal Lisa double time. But, my nurse (not the one that I adore, who understands my sensitivities to infusions and how I react) said no. I asked her to explain it to my doctor and she did and he also said no. They said I could have a one week infusion over one hour or a three week infusion over one hour.

What is their problem? So, I was forced to choose between getting the amount of Herceptin that I knew that I needed but also get sick or take a smaller dose and leave without getting sick. I decided to get the triple dose (knowing I would have some reactions) because I have already been off of this critical drug for nearly a month now and I just did not want to risk taking the smaller dose after such a long absence from this drug.

So, I felt pain during the infusion (totally unnecessary if it were run over a longer period of time) and then came home with a fever and flu like symptoms which lasted a few days. Trust me, coughing after you’ve had a mastectomy is very unpleasant.

I spoke with my favorite nurse about the shortened time for the infusion (she was out on Monday, so could not intervene) and she said that she would straighten it out for next time. She feels that it should be administered over about 2 1/2 to 3 hours with a watchful eye and slowed down if I experience pain. I just can’t afford to go in for treatment when she isn’t working that day.

Let’s see, what else. Oh yes, saw my reconstruction surgeon – she waited on expanding me (I am glad for this, less pain to deal with this week). She also does not want me typing right now – so this will be my last post perhaps for a week or more – bummer.

Saw my oncologist (not the specialist that I love) –  nope, the goober that I detest. He was less unpleasant after I kind of lawyered up on him last week. He is now too afraid to say anything negative (which by the way, was NEVER my point. I want the truth, whatever that is. But. he can’t keep anything straight during our meetings and his “advice” once nearly killed me – sent me into anaphylactic shock – I have now since found out that the PA who advised me incorrectly on premedications for one of my chemo rounds was working under him and following his advice – NEITHER of them – the doctor or his PA – consulted my chart because if they had they would have seen my prior allergic reactions and would have instructed me to take more of the medication not less, or as in their case, telling me to take none). Anyway, need to stop dwelling in the past.

I hope to see the specialist up at UCLA very soon to go over my pathology report. I am told right now that I have about a 20% chance of having a recurrence within the first year. This is what my oncologist said. Have no idea what that means, the first year after treatment is completed or the first year after surgery or what? I don’t bother following up on many questions with him now because he nearly always conflicts himself and I am left worse off, more confused than ever and pretty depressed. So this time, I went the, “not going to allow the butthead to depress me” route and left it at that. Besides, my specialist up at UCLA is the one I trust and so I will hopefully feel better after seeing her again. Until then, I will hang on to my having an 80% chance of NOT having a recurrence within a year (whatever that means). I mean, what does it mean for the year after surgery, or the year after I have completed treatment or what? I don’t know and maybe really know can tell me these things. But, I sure won’t waste my time asking Dr. Bonehead any of these concerns for his answers will not shed much light on anything or be something I would trust or rely on.

Let’s see what else, oh, I am anemic now, can really feel it too. Very slow moving. I was very anemic after surgery (probably from a combination of blood loss and chemotherapy), but have improved significantly since then and I am sure I will get back to my non-anemic self soon. Until then, the sloth makes her way up or down stairs out of necessity only (damn stairs)! In the hospital they wanted to do a transfusion, but I had not signed a consent for that (I am such a brat aren’t I?) Anyway, I told them I would not consent until my surgeon came by to see me and low and behold, yeah, my surgeon agreed we should wait on the transfusion. Phew!

Okay, it is pretty much too painful to continue now. I have stop typing.

I am doing okay, still recovering, still need lots of help doing just basic things and would love to hear from you (phone calls are great and so are emails or messages here or on face book messages). Just remember I can not type back at least not for a while.

Keep praying for me and for my family. Love to you all.

Lisa