To treat or not to treat

Jamie48135 · January 2018

Hi Everybody,

This is my first time posting on this site (or any) and I apologize in advance if this is already a topic somewhere. There is so much on here that I tried to search and somehow find that no matter what it's not what I am looking for.

So first of all I am 49 years old and was dx with stage 4 metastatic (bone) BC 4 yrs ago. I started treatment with Tamoxifen. I was on that for almost 2 years. I then underwent surgery to remove the right breast, followed by radiation. Then about 9 months of Ibrance and Faslodex.

I have 2 children 19 and 15. When I first got diagnosed my goal was to get my now 15 yo to age 16 so she could at least be self sufficient. I will make that goal barring anything super drastic.

I am now scheduled to start chemotherapy and I am just not sure what I want to do. When I spoke with my Oncologist I explained to him that I did not want to do Chemo for 6 months- Feel like crap, lose my hair, be nauseous, etc. for 6 months only to have 3 extra months to live, that just isn't what I consider to be good quality of life. So when I told my oncologist I wasn't sure I asked him what are you talking here? I also said I realize you cannot be exact but you have to have some idea/range? His answer was years, not months, so I thought "ok" Maybe I can extend my next goal. Maybe I can see my 15yo graduate high school.

I had a port put in last Thursday, but did not have a start date to the chemo yet. So they called the other day to give me my treatment schedule. They want to start me on Abraxin, 3 weeks on 1 week off. But heres the kicker there is no end date. Basically they are telling me that I will be on Chemo for the rest of my life. I think I need to talk with my oncologist, because his idea of quality of life and mine must be very different. I am seriously considering postponing this treatment until I get further info and/or options. I ABSOLUTELY do not want to be on chemo for the rest of my life.

I guess my question is...Is anybody else in this boat? How is your treatment going? And does anybody have any thoughts about different treatments they have been on that I could ask about?

blainejennifer · January 2018

Dear Jamie,

Chemo has been my way of life for the past five years. I start a new chemo when I've experienced progression on the previous one.

Think of it as managing a chronic illness. It has been my experience that most chemotherapies have let me get on with my life, and when they have been too uncomfortable, my doctor and I have fiddled with them until they are manageable.

I am so grateful for the last five years. I saw my son through high school, and college acceptance. We've really got a tight relationship because we know we haven't got forever. My marriage is amazing. These five years have given us time to talk about everything, and to really appreciate the time together.

Not all chemo is infusion. There are oral treatments, and ones that you just pop in for a shot on a monthly basis. I truly believe that my oncologist's choice to put me on a taxane at the beginning saved my life. It really beat back my tumor volume, and my cancer has remained manageable for the most part.

The best part is that you can stop at any time. If you don't like what is going on with your treatment, you have the right to change it or stop it.

Being bald is no fun. There's no dancing around that. Not all the treatments cause you to lose your hair. If hair is important to you, make the hair replacements important. Spend the money on a wig you like, with a really good wig cap that doesn't itch, and get it styled so that you feel yourself when wearing it. Insurance should cover this cost with a medical prescription. I've been bald three times, and when I do grow my hair back, I resent it sometimes for all the time it takes to fix it. But, I've always had really bad hair (fine, straight, thin), so - for me - wigs are an upgrade.

Be very frank with your Oncologist about your expectations. Let her know what is important to you. Insurance can hobble her choices for treatment. For example, you may have to experience progression on a taxane before your insurance will cover another treatment choice. Each plan varies. Plus, you can take breaks between each cytoxic chemo with anti-hormonal treatments if you are hormone positive.

The ladies here are an amazing resource. I don't know how I could have mentally survived the past five years without them.

Jennifer

JFL · January 2018

Jamie,

I am currently on Abraxane. Has been 5+ months and current term is indefinite - until it stops working or until I can't handle side effects any more. I work full time and have a 3-year old toddler and haven't had to make any major lifestyle changes on this drug. It certainly has side effects but they are doable and nothing like early stage chemo. I use a cold cap so have managed to keep my hair but now it is getting to the tipping point of being too thin to go without some "help". I am also on a power dose which is more aggressive on the hair - I get a max dose infusion every 3 weeks, rather than weekly infusions at a lower dose. Does your center have access to a scalp cooling system or cold caps that you could inquire about? It sucks to be in our position. However, I recommend you give it a shot and decide as you go whether it is something you can handle. There is also an oral chemo Xeloda which is very tolerable and doesn't involve hair loss. Or Doxil, which is given 1 time every 4 weeks and also doesn't make you lose your hair. I hope all goes well tomorrow. Know that there are many here thinking of you.

pajim · January 2018

Jamie, this next sentence is going to sound patronizing and I totally don't mean it to be but I'm not the best with words sometimes. Once the hormonal treatments fail you, and it seems that they have, you ARE going to be on some form of chemo for the rest of your life. Or until you decide to stop treatment altogether. This sounds harsh but it's the way it is.

You might be able to get a clinical trial of immunotherapy or new medications that don't involve infusion but other than that.

BUT. there are all sorts of chemotherapy drugs which have all sorts of different side-effects. I'm on an oral one right now. And the chemotherapy doses we get are much smaller than the early stage ladies get. I feel what you need to do is figure out what bothers you the most. Is it losing hair? Nausea? TIme in the infusion room? Once you know that, discuss with your oncologist which drugs you are willing to take.

One other thought. It was hard, hard when I realized that the hormonals were done and it was chemo now. It feels like a step towards dying. I'm lucky Xeloda is oral so it's sort of a transition drug. When it fails they'll put in a port and I'll start something like Abraxane (probably Taxol). I am SO NOT looking forward to that day. The realization that I'll be tethered from now on. I'll probably have a total breakdown. And I'll have to make decisions about what side-effects I'm willing to put up with. Just as you are doing now. I feel for you, I really do.

I guess I had more than one other thought. Your onc is likely right about years. I expect I have several years left. So do you. You want them to be good years. So do I.

Ask your onc to lay out all your options and his reasoning for picking this one. Maybe there's an option you like better. My onc usually lays out options. Last time he had four. I came up with two more. We traded e-mails and ended up with the original recommendation. But when I saw the choices laid out its easier to figure the trade-offs. BTW one of the options is always "no treatment". And if you want to do that you certainly can.

To treat or not to treat

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