Tag Archives: Treatment Plan

This is me off of herceptin . . .

11 May

Hello all,

I was going through some pictures and realizing that I really did look sick a while back . . . which means that by comparison, I really don’t look sick (at least I don’t think I do) now.

So, I thought I would share a few then and now pictures . . .

THEN:

Herceptin Treatment (unlike the 8 hour chemo/herceptin days, the herceptin-only treatments took just a couple of hours, still, I do not miss these days).

In between treatments, waiting to see my oncologist. This was about 8 months into treatment, post surgery and radiation. These were the days when I couldn't even stay awake in a waiting room. I was so tired and weak back then, phew.

NOW:

This is me with my friend Amber at my first baseball game in over a year. (Go Angels!) Now off of herceptin . . . and sporting an actual haircut, sort of . . .

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1/3 OF THE WAY DONE WITH RADIATION . . .

20 Nov

That’s it, that is all I wanted to say. That, and thank you to everyone who is, and has been, praying for me. I greatly appreciate it.

Okay, I guess there is still a little more to say:

Today was the completion of two weeks of radiation. Friday’s are the hardest as it has been five days in a row of mega doses of radiation each day. My skin looks sunburned is all, but feels quite tight. Mostly I am just tired. I slept most of the day today. My doctors tell me that weekends are intended as a time for rest to recuperate from the week of treatment. By Sunday (if last weekend was what is to be typical) I should feel at my best and ready for the next week of treatments to begin. BUT, I am so thankful for Thanksgiving because it means that I will have only three treatment days next week (Monday through Wednesday). I will then have Thursday through Sunday off. As I said earlier on my blog, I had the option of coming in on Friday (as the Cancer Center is open). But, I decided to take them up on their offer of having Friday off.

I am told it will not change the effectiveness of my treatment – it will simply extend my treatment by one day. So, instead of my treatment ending on December 18th, it will end on December 19th. All I know is that it will be over before Christmas and that is truly a blessing.

So far my physical symptoms (other than exhaustion) have not been too bad. I am practicing meditation and relaxation techniques and this has been extremely useful.

My blood pressure prior to my cancer diagnosis was about 104 over 55, sometimes lower. So I did not have high blood pressure. But, having now been in treatment for nearly 8 months – a great deal of that time my blood pressure was much higher (sometimes still in what is considered a healthy normal range, but many other times, way too high).

Well, ever since I incorporated the relaxation and meditation, I have seen my blood pressure return to normal. That has to be a good thing. I know it is not a cure for cancer, but it means that at least my heart is under less pressure and that has to be a good thing. Still, it takes a lot of effort to keep it up and to actively avoid stress. It is working though and so I just have to keep it up.

I will be going to bed soon, as rest is key.

Thank you for your continued prayers and positive thoughts – please keep them coming my way.

Much love,

L.

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Radiation Starts Tomorrow . . .

9 Nov

Tomorrow is my first radiation treatment. I have gone to what they called a “simulation” (this past Friday). But, I still do not really know what tomorrow will be like. Friday I was put on a table underneath the device that will deliver the radiation beams – – at least that is what I think it was. I am not really sure. In any case, they (the staff) took pictures and made sure “everything lined up properly”. They also brought out that darn black permanent marker and made marks all over the place (on me). And, yes, I do mean one of those permanent markers you would get at the office supply store. It is not the first time I’ve been marked up. But, this went all the way up my neck and was quite visible.

I was originally told that I would get tattoos on Friday, but, that will happen tomorrow instead. The tattoos will be freckle size I am told and I have even seen one on a woman (a woman at the cancer center showed me one of hers). It was tiny. But, these tiny tattoos will be markers for where the external beam radiation is to go. Their goal is to radiate my chest wall and my remaining breast tissue (on my right side – as in my right side – not over or through my heart which is what would occur if it were on my left side – so I am grateful for that – I do not want to radiate my heart). 

Anyway, the staff in the radiation oncology department at Hoag Hosptial are all very nice and I am glad to be getting treatment there. I have a lot of confidence in the staff and in my radiation oncologist, Dr. Cox. He is very personable and he actually reads my file! I know this because I watched him do it. Halelujah . . . a doctor who can and will read! (if you are joining or just starting to read this blog now, well, you would have to go back a few months to read about how I feel about my oncologist – he would never read my file and in general seemed completely uninformed about my personal case. I will have the joy of meeting with him this week. The key with meeting with him is to not let him bring me down. He is an odd individual to say the least. But, I digress – I like my radiation oncologist and he will be seeing me every week while I am going through radiation. A nurse will also see me/my skin every week. And, the weekend of my birthday I get to have two days off of radiation due to the Thanksgiving holiday. That will almost be the halfway point in treatment and a probably welcomed break.

This weekend was relaxing. But, I was very, very disappointed that I was unable to attend the wedding of a really good friend of mind. Unbeknownst to me,I am more at risk now for getting an infection than I was during chemo. So I am supposed to avoid anyone who has been sick or near anyone sick recently and I have to avoid large gatherings. I had no idea. But, it probably explains the two infections that landed me in the hospital since my surgery. What I didn’t realize was that my white blood count has dropped and is below normal. It has been below normal ever since I stopped getting the Neulasta shots (which were given during chemo to boost production by my bone marrow. Well, it worked really well. But, after my last shot, it eventually wore off and my white blood count has been below normal. 

Just as a comparison, my white blood count was never below normal during the chemo. Neulasta works well. But, you can’t just keep taking it. So, I have to wait until my bone marrow starts producing it. The same is the case with my red blood count. I was never anemic really during the chemo, but after surgery (some blood loss) and not having an appetite (so anemia from lack of iron in my diet) my red blood count dropped down to an all time low. It has come back up considerably, but is still lower than it ever was during my actual chemo (and just for some perspective – my last chemo was July 16th).

During chemo I checked my blood results weekly, I always had the office fax the results to me. But, after surgery I was less concerned about my blood counts because I thought (and no one told me anything different) that my bone marrow – no longer under the attack by the chemo – would just start doing it’s job again. But, I was wrong.I am actually more at risk now for catching something than I was during chemo. So, after just getting off of the IV antibiotics for my second infection that required hospitalization, I am finally told that I should avoid crowds, limit my contact to a few people at a time. So, the wedding and the reception were out. I am so disappointed to have missed out on my friends’ very special day. I hope they will understand. I was actually planning on at last making it to their wedding. But, I woke up in too much pain this am to be able to disobey doctor’s orders.

The pain seems to lessen now quite a bit by the afternoon. So that is a big improvement. Of course, who knows what the radiation treatment will bring. But, I am optimisitic (trying to be anyway) about it. everyone reacts differently – some have more burning than of others and more discomfort and pain. But, hopefully my experience will not involve a lot of pain etc. But, in any case, it will pass. And, I will get through it.

Please continue the prayers and positive thoughts – keep sending these my way. I greatly appreciate it.

Much love,

Lisa

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Radiation Starts Monday . . . most likely . . .

6 Nov

So today I go into Hoag for a “radiation simulation” – sort of a practice run I guess. Actually, it is pretty high tech (for which I am glad). Wednesday I went in for a CT Scan so that the doctor could make marks for where beams of radiation should go so as to miss as much of my lung as possible while at the same time radiate the areas needed. This is what the CT scan was for – to create a map of my chest so that the radiation will radiate my remaining breast tissue, the chest wall and lymph nodes above my breast (all of this is on the right side where I HAD cancer). There is no indication that the lymph nodes to be radiated have cancer. However, studies show that radiation after mastectomy reduces the rate of recurrence of breast cancer in the same breast (recurrence of cancer is most often in the same breast that had cancer originally).

I will also get tattooed today. So two things I never would have done in my life time: get breast implants or a tattoo. 🙂 The tattoos will be freckle like in size – so these will hardly qualify as a real tattoo. Still, that is what they told me – that they were going to tattoo me today. The tattoos will be used to line up beams and things like that so that the treatment is to the right area each time. who knows, maybe it will be in the pattern of some part of a constellation like ursa major or minor – maybe the big dipper or little dipper. I will have to use my imagination to come up with some kind of connect the dots. Maybe this isn’t funny at all. But, I don’t know how else to look at it today.

I know I am not going to enjoy the experience and I know it will be uncomfortable. But, it is the coming weeks that cause me the most anxiety – going in everyday with the intent to burn the skin so as to kill any possible microscopic cancer cells lurking about waiting to grow into something again. I know it is the right thing to do, but, I am not looking forward to the pain and discomfort that lies ahead. Still, I am choosing to expect the best, the least amount of pain and the least amount of fatigue from this treatment.

Another aspect of today will be to see if the mold they made for my right arm to make a thing for my right arm to go into , works. It will serve two purposes: 1) to keep my arm in the same position each time I have treatment and 2) to protect my arm from being radiated.

So today we will check these things all out and assuming everything fits and matches up, then my first radiation treatment will be this Monday.

Wednesday I saw one of my surgeons and she removed the pick line out of my arm. It is soooooo nice to go to bed and not be constantly wakened by snagging it into blankets or just bumping it into my side. It was quite annoying. it was not the end of the world, but still, I am very relieved that I do not have to deal with it now.

Well, wish me luck today.

Thank you for your continued prayers and positive thoughts coming my way.

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Hoping for Blue Skies Ahead

5 Nov

Last night was a rough night. I woke up at 2:00 am in a lot of pain and there seems to be very little that can be done about it. The pain is less severe right now. But, it still is preventing me from doing a lot. And, this, my one day this week that I do not have the interruption of a doctor’s appointment. Tomorrow I have two appointments.

Anyway, enough on that. I am trying to get back to work. Oddly enough, I worked full time during chemo (the time I was told would be the worst and most difficult of this whole process). Instead, it has been post surgery that has been most difficult. I guess my immune system being shot down by the chemo prior to surgery didn’t help matters. So, hopefully I am on the mend.

I have a radiation “simulation” appointment tomorrow – where they calibrate the machine with measurements taken earlier this week via a CT scan of the area to be radiated. Then I am supposed to start radiation on Monday.

Please say prayers for me on all of that.

I miss everyone and hope to see you all soon.

Lisa

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Good news . . .

1 Sep

Good news, I have an appointment with the specialist up at UCLA in about two weeks. I wish it were sooner, but, she is out of town all of next week. But, it is not like I will be doing anything differently prior to meeting with her anyway. I am very excited to meet with her as she will definitely be able to assess my situation and give me a plan that I can believe in and trust.

I spoke with my surgeon yesterday and she said that a little typing is okay, just stop if it hurts. Well, it already hurts a little, so this will he kind of short.

I spent the entire day in bed yesterday – no t.v., no movies, just resting (mostly slept in a quiet, dark room).

My only outing was at the end  of the day – a friend of mine took me to a hair salon down the street from my house so I could dye my hair; I like  it (what little hair I do have), the color is sort of a strawberry blond. It beats the white hair that was coming in (which my doc said was temporary, still, it was getting old). One advantage of having hair that is only about a 1/2 or 1/4 inch long is that it does not take long to dye. After chemo it is typical for your hair color to change and to come back in curly (assuming you have straight hair to begin with it). I also supposedly comes back in thicker. My hair is growing pretty fast. But, it started coming in white, then dark so now (before I dyed my hair) it was kind of a gray color overall. My docs say eventually I will get my own hair color back. We shall see. Until then, there is hair dye 🙂

I am getting my bike back tomorrow! Woo-hoo! It is not much of a bike (I had a really nice one, but it was stolen last year). But, it is the only bike I have right now and it fits me (not too big etc.). So, I am really  glad to be getting it back. I probably won’t be riding it right away, but at least I have it back and so when I am up to it, I will be able to go for a spin. I have been trying to get this bike back for I think over tw0 months now. Anyway, enough said on that, I am glad to have it back today!

Well, I am sure there is more to say, but I am just too tired,

I am doing okay, still very tired and in some pain. But, all in all, I am doing better. I plan on another day of rest today. My surgeon says to expect 8 weeks for a “full recovery” from the surgery. If that is the case, then I am nearly halfway there since it has now been three weeks and four days!

Please continue to keep me in our prayers,

Lisa

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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

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Treatment Plan

26 May

Well, this is the crummy part.  I can not sleep.  It is three in the morning and I still can’t get any sleep.  Last night was the same, so I am going on two days without more than an hour or two of sleep.  And I was doing so well there for a while.

I will get back on track.  Hopefully tomorrow will be better.

So, since I am still awake, I might as well write.

Treatment Plan: So here is the treatment plan that I was given.  I am to have a total of six chemotherapy rounds.  In addition to the chemo, I am also on a targeted therapy called Herceptin.  Herceptin works on HER2+ cancer (the kind I have).  It is an amazing drug and I am so grateful that Dr. Slamon at UCLA developed it.  He has saved the lives of so many women, curing a type of breast cancer that once was really not curable. The chemo will be followed by surgery and then, most likely radiation. Reconstruction will fit in there somewhere – but, I am still doing research, interviewing plastic surgeons and learning about the different reconstruction options (especially given the likelihood that I will have radiation as part of my treatment).

Neo-adjuvant Treatment: When chemo is given prior to surgery it is called neo-adjuvant.  In some cases chemotherapy precedes surgery in order to shrink the cancer so that surgery can even be done.  That is not the case with me.  My tumors are small and as a result I could have surgery at any time.  However, the reason to do neo-adjuvant chemotherapy in my case is to see if we can watch the cancer shrink.

The advantage of doing chemotherapy prior to surgery is that we can watch and see that the chemotherapy is actually working.  If I were to have surgery first, followed by chemotherapy later, then there would really be no way of knowing if the chemotherapy was effective with my cancer because we could not watch it shrink during chemo since it would already be removed.

This is significant for me and was a major reason why I chose to do the chemotherapy first. Everyone responds differently to treatment. And while it is more likely that the chemotherapy will work, I will have a greater peace of mind if I can know for sure.

For me it is all about making sure that I do everything I can to fight this disease now, stop it in its tracks and prevent it from coming back.  If we can watch the cancer shrink, then we know that the chemo is working on my cancer and that it is then also killing the microscopic cancer cells that are floating around in my body (that without successful treatment, would come back).  The kind of cancer I have – invasive breast cancer, that is HER2+, has a very high reoccurrence rate.  That is why the treatment is so aggressive even though my tumors are very small.  By adding radiation to my treatment plan, I can further reduce the chance of having a reoccurrence.

The other possible (hopeful advantage of having chemotherapy first is that I could have what they call a “complete response”.  About 40% of women with the kind of cancer that I have, who undergo the kind of neo-adjuvant therapy that I am doing, experience a what is called a “complete response” – meaning that prior to surgery the cancer is eliminated.

If there is a complete response, then when I have surgery the surgeon is removing dead cancer.  This would be best. It doesn’t change the need for surgery. But, it makes the surgery easier because there is no risk of infecting healthy breast tissue with cancer because the cancer is dead.  So, that is what we are hoping for.

I am nervous about the upcoming breast MRI. The specialist I met with at UCLA said she would not do one until I was done with all six chemotherapy rounds. She said that she would not interrupt the chemotherapy. When I asked her what if I was not one of the 40% that has a complete response prior to surgery, she said “You’ll be on Herceptin for a year, what are you worried about?”  Um, dying . . . that’s what I am worried about.

It was good to hear that she was so confident. But, unfortunately I don’t get that kind of reassurance from my actual team.  Instead, I am told that I have a good prognosis. But, I am also told that the kind of cancer I have has the highest reoccurrence rate.  I am also told that some patients come back with brain cancer.  It’s not all rosy sounding.  Well, okay, none of it is actually.  But, I cope and I am grateful, so grateful that there is a drug that targets the kind of cancer that I have. Not all women respond to the treatment, but hopefully I will.

My Own Treatment Plan: In addition to the treatment plan that my oncologist and surgeon have put together, I have also put together my own “treatment plan” that includes a very changed diet and as much exercise as I can.

From the moment I was diagnosed I changed my diet. I considered myself pretty healthy before, even was a vegetarian for a number of years (although not most recently). But, after being diagnosed with breast cancer, I immediately changed my diet.  I knew that my cancer was hormone responsive – meaning that in the presence of hormones, my cancer flourishes apparently.  So, I decided to eliminate sources of hormones in my diet.  I had also heard that sugar feeds cancer.  I got a lot of information in the beginning (some of it pretty wacky) that made me pretty crazy.  But, after doing a lot of my own research I chose to make changes that to me make sense.

I don’t know about whether sugar feeds cancer or not.  But, I don’t get a lot of sugar anyway, so that wasn’t a big issue for me.

I have eliminated all dairy products and all meat except for some chicken and fish.  Because my cancer grows with hormones, I have chosen not to get any (at least as little as possible) in my diet.  I was told to avoid soy for the same reason because it is a plant based estrogen and would only encourage the growth of my cancer.

I have gone to a nearly completely organic diet.  I do go out to eat and enjoy that still. But, I make choices that are lower in risk – for example potatoes are very high on the pesticide index – so these are pretty bad unless organic.  But, broccoli, avocado and other vegetables and fruits are on the low end of the pesticide index and so are pretty safe to eat even if not organic.

No doctor has told me that I need to go organic.  But, for me it makes sense.  And, my doctors can’t believe how well I am doing – my white blood count has never left a normal range (normal, as in a normal person who is not going through chemotherapy) and my red blood count (something that typically gets low, causing anemia and pretty bad fatigue in chemo patients) is also within normal range.  I think this is due to my diet and exercise (maybe more from the exercise, I don’t know).  All I know is that so far, I am doing really well with the treatments (except of course for the time my first oncologist – who has since been fired – tried to kill me . . . I will save that for another separate post).

I have also eliminated caffeine.  I was told that caffeine was okay.  But, it is not.  I stopped having coffee months ago. But, only just yesterday found out that the drug Herceptin does not interact well with caffeine – that caffeine reduces the effectiveness of Herceptin. This was in a study, not even all that recent.  Yet, my doctors were not aware of this at all.  Amazing. There must be so much to keep track of I guess, especially if you are a doctor treating many different types of cancers.

Still, I am just so glad that I had eliminated caffeine. I would have been devastated to learn that caffeine reduces the effectiveness of Herceptin if I were still drinking coffee. I wish I could tell every woman that is getting Herceptin treatments about the bad interaction with caffeine.

In addition to diet, I have begun an exercise plan too.  Recent studies show that exercise during chemotherapy increases T cells and reduces the rate of anemia (caused by a reduction in red blood cells).  70% of chemotherapy patients get anemia.  But, for some reason those that exercise regularly throughout their treatment, have a lower rate of anemia. So, I am trying to prevent anemia by getting as much exercise as I can.

Obviously some days are simply not an option. But, I try to get in a one mile walk every day.  I was able to keep that up this past week. I plan on going to the gym next week (after the MRI and before my next chemo on June 4th). Assuming, of course, that the MRI results are good and that I am then still going ahead with the fourth chemo round.

Well, I think I have had enough, it is 3:40 am.  Maybe now I will be able to get some sleep.

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