Getting back to my former self & disappointing malaise

thatblondegirl

Good morning, Friends!

I’ve thought about this a lot and have finally decided to ask what y’all think. Please keep in mind that I’m not complaining because in the grand scheme of things:1) I’m still here & 2) I feel I’m doing the right thing to prevent a recurrence (immunotherapy).

It’s been 14mths since my last chemo infusion. I’m taking 100mg of the Zejula every day. You know for a while I was taking 200mg and my bloodwork was terrible…like, had to get 2-unit blood infusions twice :((. My bloodwork now is good, but I still don’t feel very well.

I am asked regularly: How are you doing? I can never feel comfortable saying anything but “I’m OK.” I can never say (as I used to OFTEN), “I’m great!” This is very disappointing to me. I’m tired. I fight off frequent headaches. Some days I’m more nauseous than usual. If I do one thing that requires physical labor, like work on my plants or in the yard, well….that’s pretty much it for the day. I have found my new mantra is “try to do at least one constructive thing per day.” That’s pitiful! I used to be able to do many “constructive things” per day. If I run a couple of errands and am gone for a few hours…that’s pretty much it for the day. Thank God I don’t need to work. I guess I’d starve. There is NO way I would have the strength for that!

I’m thin….so not carrying around extra pounds…I’ve always been a walker for exercise..I’m still doing that, but my maximum is 30 minutes…..and I have no illnesses…zero. I don’t perseverate about cancer recurrence or the cause of this malaise. I have a wonderful relationship and zero worries, so it’s not any of that. I find myself muttering to myself, “I don’t feel good. Yeah…nothing new about that.”

So….Has this happened to some of you? Am I still experiencing a hangover from the chemo? Is there hope that this is transient? At what point in your recovery did you feel back to your former self?

Love to all ❤️, A

NoTimeForCancer

A, I hate to say it, but I think the phrase "everybody's different" probably fits. However, I do think it takes longer than we think (or want) to get back. I am knocking on the door of 10 years from dx and treatment, and it there were times during the early years I would drag, and wonder, is this from treatment? Will I ever get back to who I was? I am also not taking anything and the Zejula may be a contributing factor to how you feel, but I just think it takes time. We should continue to be kind to ourselves and push yourself as much as you can. REST is RESTorative, so enjoy it as well. My two cents for the day.

Fridays Child

First of all, I'll share with you that at a post-chemo series of classes my cancer center offered, one of the things they told us was that it's likely to take at least two years to get past the lingering effects of chemo.

If we're on a maintenance medication, those are going to have their own effects. As you noted, the higher dose was hard on you. The lower dose may still affect how you feel, even if your blood counts are back to normal. I take Megace and fatigue is one of the side effects. I can so identify with some days only getting one thing done!

Give yourself more time. It seems like forever, but you're not even to a year and a half yet. Be sure the doctors know that you have the fatigue, headaches, and nausea continuing in case there's something they can do about it. Is there a time frame for the Zejula or is it open-ended?

cmb

I did not have any additional treatment once I finished chemo and external radiation. It took me about six months to find a couple of exercise classes that I liked and could stick with after treatment. I've added a couple more classes in the intervening years.

But I found that I had lost core strength after treatment and it's only been within the last year that I've been able to do some of movements that rely solely on core strength. Could I have accelerated this progress if I had taken more intense, frequent classes? Perhaps – but I did what I felt I could handle, even if it wasn't at the level I had done before cancer.

In general, I think I now feel about the same as I did before, but it was a gradual improvement process. But I still have the mild neuropathy in my feet, thin hair and the lymphedema in my legs to deal with every day, so things will never be completely "back to normal."

And in your case, it wouldn't surprise me if the maintenance medication also has some effect on how you feel right now. Aim for small improvements where possible, but don't push needlessly. The goal of treatment is to give us more time, so enjoy the moments that you have now.

MoeKay

A, all three of the things you mentioned--tiredness, nausea, and headaches--are listed as common side effects of Zejula. I would definitely check in with your oncologist to see if he or she has any suggestions for lessening or alleviating these side effects.

Don't be too hard on yourself, as NoTime says, everybody is different. It takes as long as it takes. For me, it was several years before I was anything remotely resembling my former self. I didn't have chemo, only internal and external radiation after surgery, but nevertheless cancer had a big psychological and emotional component for me.

Good luck in getting some answers and some relief!

MoeKay

thatblondegirl

OMGoodness, you ladies are all so kind. Thank you so much for your responses!

NTFC, I always love your $.02! 😊

I know the Zejula is likely responsible for my ills, but that’s exactly why I wanted to inquire how things were for all of you! It sounds like it took some time, and that’s good to hear. Thank you FC for that information your class reported. All I’ve ever read said a year, so that’s encouraging that it may not just be me..or the Zejula…but maybe expected. The darn Zejula is forever! (Which I am hoping is a loooonnng time!). I can give it more time and if in another year or so, I haven’t improved, I’ll know it’s the drug.

cmb, I know you still have those side-effects & I hate that for you. I’m glad that otherwise you can say you’re mostly back to normal. 😘

My regular 3-month follow-up with GO is in about 2 weeks. I’ll talk to them about this, but I already know what they’ll say: “It’s up to you if you want to continue the Zejula or not.” (In other words, not too helpful!) I will ask about the bloodwork appearing to be fine, but I’m really not. I’ve had migraines off and on for decades, but never enough to warrant taking a prescription. I’m going to ask about it and do some research, but I’d guess the list of side-effects is endless. Then I have a whole other list of problems!

My head hurt so badly one night last week, I was half-afraid something worse was going on. And my normal remedies weren’t touching it….hot showers…I took 3 before it was over…OTC migraine med with caffeine…even broke out the compazine given to me during my chemo days. If pain had been at the base of my skull, or particularly sharp in one place, I would have woken up my husband for an ER visit. It finally abated.

Both my PCP and the GO’s office practically beg me to take Xanax during the day (I take at night for sleep) to help with headaches and nausea, but then I’m sleepy, not so sharp-minded, ravenously hungry, and I’m afraid of developing a tolerance…and then it won’t help me sleep!

Y’all seeing a pattern here?….Can’t Win!! 😆

Thank you again for your thoughts and well wishes! I’ll let you know what can be done to help.

❤️❤️❤️, A

thatblondegirl

MK, please let us know how your Mohs surgery went! I your scalp is good!

❤️❤️❤️, A

MoeKay

https://csn.cancer.org/discussion/comment/1696456#Comment_1696456

My post-surgical report is there, A! See post #24 on Rita's "Great . . . another cancer to contend with." Since then, the incision has healed considerably. I'm still working on sorting out the bandage frustrations though. I will update in the coming days. Thanks for asking and feel better soon!