Getting nervous 😟 : I’m getting a... - SHARE Metastatic ...

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Getting nervous 😟

Clair19
Clair19

I’m getting a little worried that I won’t be able to take targeted therapy. I was pulled off 2 so far and I think there’s one left. However the only one left is just as bad on your wbc and Neutrophils. So what next? I don’t have any idea, I guess maybe one of the older hormonal therapy’s. Does anyone have any suggestions that would help me feel better about this whole thing. I know your not Drs but most everyone seems to know as much. Thanks 🙏

28 Replies
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Hi Clair

I’m sort of in the same situation..at the moment back on Ibrance 100 mg as couldn’t have the higher dose because of wbc..however the letrazole seems to be working..been on it 3 months and tumour markers gone down from over 1000 to 280..so don’t give up on the older drugs..my oncologist says she’ll try me with tamoxifen if no luck with the Ibrance or if letrazole stops working

Love b x

Clair19
Clair19
in reply to Barbteeth

Thanks for that! Wow your tumor markers are really going down. Mine started at 800 now 400. I’m taking Faslodex so I’m getting something. Yes I guess I’ll be on the older ones which seem not to have as much side effects. I’m glad you can take Ibrance. Good luck 👍.

Barbteeth
Barbteeth
in reply to Clair19

Hi

I’m having blood tests in 2 weeks to see if I can continue with Ibrance..oddly I didn’t feel so bad even when blood cells were very low..wierd

All in all I’ve taken a total of 3 weeks Ibrance so it’s early days

Best wishes

B x

Clair19
Clair19
in reply to Barbteeth

I know my Neutrophils where .5 and I felt great! My husband met me at the door, said my blood work was bad. So he took me off completely.

13plus
13plus
in reply to Clair19

I only took iBrance for 2 weeks and was told today to stop as my WBC is so low! And I felt good too so it's very frustrating. Now I wait two weeks to redo my blood work and the plan is to drop down to 75 mg and see how I go with that.

i am pretty sure that oncologists have dozens of things they can throw at cancer before running out of options...just focus on the present. let your onc worry about future stuff!

Clair19
Clair19
in reply to kit5

I just can’t take anymore chemo, I took 6 months of the Red Devil and it messes up your heart. So maybe something will come up! The Faslodex will I hope keep me stable for now.

I was told by my first onc that if I couldn't take Ibrance that maybe something new would be available. I went to MDA and when I told my now onc she about fell out of her chair. I was told there are already several others available, so don't give up. Ibrance did not work for me, it wasn't so much as lowering me counts, just didn't work. I could tell after the first 3 months because my hair was coming back really thick.

Hi clair19. Had Ibrance 125, 100 and 75. Not working for Bone lesions, but while on 100mg, liver spot cleared.

Doc took me off of Ibrance. Wants me on Eribulin which is an infusion drug. Waiting for MDA to give me an appt.

Janine in SE Louisiana

Clair19
Clair19
in reply to JBirdnut

If I had it just in my bones or liver I wouldn’t worry so much. But it’s in my lungs so that’s why I took chemo. I’m Her2 Negative so options limited. I can’t take anymore chemo it’s bad on heart and lung. I will figure something out. Thanks.

Clair19
Clair19
in reply to JBirdnut

My Mom went to MDA. Unfortunately it was way back in 1990. She passed away December 5th. But that’s when they didn’t have anything but chemo. You are lucky, they have so much now days. 🙏

Hi, Clair!

Ask your oncologist about adding the herb, astragalus, to your arsenal; mine okayed it. It is said to help boost the immune system by increasing WBC's. Here's one of many articles: rjwhelan.co.nz/herbs%20A-Z/... I get my supply from Amazon: amazon.com/gp/product/B0002...

Is your major side effect low WBC's, and is that why they are pulling you off certain treatments? If that's the case, I'd really investigate adding this herb; maybe even get an appointment with an herbalist and report back to the onc. Good luck, Clair; you are in my prayers! XO Linda

Clair19
Clair19
in reply to SeattleMom

Thanks Linda, I go today so just nervous on what he wants to do. If it was just in bones I wouldn’t worry as much. When it’s in your lungs you do freak a little more. I will just pray something can be used before my lung gets worse. Hopefully the Faslodex will hold it at bay for a bit. Thanks again Linda, always trust your advice and makes me feel better. I will ask him today when I see him.💗

I think we all rely a little bit too much just on the drugs

Clair19
Clair19
in reply to blms

You know it.

I hope you get a comforting plan from your doctor today. I feel your anxiety.

Stay strong!

Clair19
Clair19
in reply to JBirdnut

I hate coming to the oncologist, it can’t just be me. I guess it reminds me I have this horrible disease. I imagine it’s normal but I don’t mind my other Dr.. I love my oncologist, he is the number one Oncologist in the South, people come all over to see him. I mean it’s not NY or a big clinic but I get excellent care. I’m just a big baby ever since my diagnosis.

You are not being a big baby! All of us have no choice but to be brave.

What part of the South are you in?

I am in SE Louisiana.

Clair19
Clair19
in reply to JBirdnut

I’m just South if Atlanta. Called Griffin, very small town.

It is so normal to get nervous, you have lots of company. I had a pet scan done today, I'll know what the results will be in a few days. My thought is, never, never give up, always look for potential options and hope for the best. Thoughts and prayers are with anyone here who is struggling with this.

Clair19
Clair19
in reply to SusieIM

How true! No giving up here just hoping for good test results. A little encouragement goes a long way with anyone. I know some people here more than others, but all are in the same boat. We need to all be thankful for improvements in modern medicine for us. Just think what will the next couple years bring. 🙏

Clair19
Clair19
in reply to SusieIM

I will pray for the best results for you!! Remember things will always go mostly well but if things are a little off it will pass and get better. Prayers for you always.🙏

Hi Claire,

I read your posts all the time. Want you to know you are in my thoughts and prayers. Will be "off the air"for a while and I look forward to hearing good things when I get back. Fingers crossed for you.

Clair19
Clair19
in reply to lashinator

That’s very sweet of you! I hope your being gone is for a good thing. I will be here when you return. Thanks for the lovely message, made me feel good I say things people enjoy reading.

Oh I we all get nervous. A normal reaction to a difficult situation. Hang in there, there are several options, your oncologist will figure it out. Please keep us posted.

I heard that after target medication They take Abraxane, read about it, take care and God bless you

I was reading that you can not take Ibrance because your WBC is low, mine is too, but after my three weeks my is very low 0.5 and feel good my oncologist orders Neupogen two shots then goes up and after one week I start again with Ibrance, I am switching from Letrozole to Faslodex, I am having too much pain on my hips

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