Starting on targeted breast cancer meds.

Posted by ginny100 @ginny100, Aug 13, 2024

Hi all, hope you are coping well with your situation🙏. I am 12 years on from right sided mastectomy and SN biopsy. Last year I started developing cancer in the lymph removal scar, which spread up my arm and down my chest wall. Had it treated with radiotherapy 4 months ago. My onco radiotherapist said the treatment had gone well and he was pleased with the result. However, the CT scan showed a nodule in my left lung had doubled in size from 8mm to 19mm in 6 months. I have been referred to the thoracic clinic who wants to do a biopsy, which I think seems rather risky. Also the lumps in the skin under my arm and on my chest wall are coming back. My right arm movements are somewhat restricted. It is hard to pull a jumper off my body! I am considering starting treatment with CDK4/6 Palbociclib, Tamoxifen or AI Letrozole. I also have Osteoporosis. So, I would be very grateful for any response from anyone who have used these meds and what was your experience . For instance did you loose hair, were your bones affected, were you able to live a normal life whilst on them and how long have you been on them. Thank you for taking the time to read this and I would be most grateful for any responses🙏🙏🙏🙏

Interested in more discussions like this? Go to the Breast Cancer Support Group.

I didn’t really take anything prior to using Tamoxifen - I pretty much started everything together. I had 6 months of Taxotere. At the same time, I used (and still use) Tamoxifen + Herceptin + Perjeta. After 6 months (no cancer detected) , I continued to use Tamoxifen, Herceptin and Perjeta. My cancer came back after 10 years (in October 2024) so I was taken off Herceptin and Perjeta but I still take Tamoxifen. I am now just using Tamoxifen and Enhertu. After 4 treatments, most of my cancer has resolved but I still have a few spots that are remaining but are improving. I hope you are doing well.

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@lrr

reply to myoga | @myoga | 2 hours ago

...sorry to hear your trouble, have had bad doctoring so many times, you often don't find out that's where you're headed until the bad results show up - something not done, not done right, done with poor quality to equal lesser results, etc - and always there's an excuse or blatant lies to cover up, some of the time you can't prove anything, recently was burned at face, neck & chest with radiation (including sore throat/neck swelling), but was not getting head/neck radiation!! Radiation Tech first told me they could not see the burn or swelling but still decided to tell me, maybe it was caused by the gown! ...you can use research and due diligence to find quality medical care and still come up with a bad experience... have had my share of really great, over-the-top medical care but finding these providers isn't always easy... and, unfortunately for the patient, a lot of medical think you're a problem and a pain if you're asking questions--however simple--about your issues/treatment, many just want to tell you, "we're doing A,B,C...just show up next week" ...partly this happens because their time is very limited with each patient, that's the nature of most businesses, but not much can help a bad outcome that could have been prevented by better communication on everyone's part... remember, there are many more good than bad providers in medical, just have to find them and keep them on your team... wishing you good luck and good health in all that you do...

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@lifetraveler Thank you for your hug! I love your name!
@lrr Thank you for your kind words. I’m sorry you also had experience with bad doctors. As you said, there are more good than bad doctors. I’m happy that I’ve gone through with the mastectomy after 2 years of wavering. Lumpectomy and radiation was an easy out, but with brca, that’s just a quick fix.
Thank you for “listening”. Wish you all the best!

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@myoga

Now it happened to me! I told my surgeon at the pre-op that I wanted nerve blocking. She was “huh? I’ll order it but you need to talk to anesthesiologist “ . So on the surgery day I told my anesthesiologist and he said “ if she (BS) doesn’t do it, I’ll do it,” After the surgery I woke up in pain, none of them did it probably because they didn’t know how. I had tons of pain med to control the pain. It’s been two weeks and one side is still badly bruised. How in the world that they don’t know what nerve blocking is? I had epidural 20 something years ago! The anesthesiologist graduated from UC Irvine, a well known medical school in Southern California! Just venting!

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I was diagnosed with breast cancer in Aug. 2024. Had unilateral mastectomy in Oct. I was given a nerve block so I thought “oh , pain is not bad at all!” Of course it wore off but I’m so thankful my doctor did the nerve block to get me thru the first few days. Only took Gabapentin and alternated Tylenol and Advil.
I can’t imagine why your doctor did not use nerve block !
I’m still having some nerve pain but hopefully it will be gone SOON !
Hang in there.

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@kathyoung

Thank you! I am having the lumpectomy on Tuesday.

I don’t know why I’m so nervous. I had a colon resection a couple of years ago, I wasn’t this nervous with that! I think it’s more the worry of the sentinel node biopsy coming back positive.

Thanks again for your reply. I will post again after the surgery.

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Our breast our very personal to us gals. It is apart of how we feel and look.

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Thank you! The pain only lasted one week and with pain med it wasn’t so bad. I don’t feel nerve pain yet. Did you experience chest tightness during the recovery? I still have the pain when getting up, feels like there was something stuck to my chest and pulled it down. It goes away after a while. Hope your nerve pain gone soon. It’s a relief to be on the other side. Comparing to mastectomy, bilateral salpingo oophorectomy is a walk in the park. I lucked out that my surgeon was a very good one.

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@anjalima

I had a single mastectomy, out patient, home in 7 hours . I took one oxy with Tylenol that night for pain and switched to Tylenol 600 mg ( Rx strength) the next day and onward until I could take Advil ( regular strength) 3 days later.

I was amazed at how little “ pain” I felt. I do have a fairly high tolerance however.

Best to you!

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My mother was like you. She is now 86. She had a lumpectomy in 2007, a masectomy in 2010 and another in 2014. I had a lumpectomy in 2023 and a DMX in 2024. When I asked her how long she had pain she said she didn't have pain with any procedure. She's anti medications. I took the prescribed meds on the Dr's schedule to stay ahead of the pain. I don't remember much pain either.

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@ginny100

Hi all again, my quality of life has now deteriorated to the point I am considering starting on Palbociclib CDK 4/6 inhibitor together with an anti aromatise like Letrozol. What has anyone’s experience been with these drugs? I am concerened about my bones, jawbones and hair. How did you feel on these drugs and what positive effects did they have? Did they shrink your cancer?
My quality of life is lessened as my lung capacity has diminished by 20% and my arm movement is restricted to the point I find it really difficult to put my hair up. I also feel nauseous quite a lot and constant pain , soreness and irritation from the radiation fibrosis. All the docs think I have Stage 4 cancer. Next week I will finally have a couple of MRIs so we can find out what is really going on inside my axilla and brachia plexus. Also I have developed a large breast cancer in my other breast and the lymph nodes in that axilla. The docs think they can shrink my cancers with these hormone blockers. What is your experience??
Would be very grateful for your responses

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So sorry to hear you are going through this. I don’t have knowledge on the meds but can only offer you hope. Please don’t give up and ask our Lord to guide the hands of your treatment team. Follow the onco treatment and continue to fight. You will be in good hands.

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@myoga

Now it happened to me! I told my surgeon at the pre-op that I wanted nerve blocking. She was “huh? I’ll order it but you need to talk to anesthesiologist “ . So on the surgery day I told my anesthesiologist and he said “ if she (BS) doesn’t do it, I’ll do it,” After the surgery I woke up in pain, none of them did it probably because they didn’t know how. I had tons of pain med to control the pain. It’s been two weeks and one side is still badly bruised. How in the world that they don’t know what nerve blocking is? I had epidural 20 something years ago! The anesthesiologist graduated from UC Irvine, a well known medical school in Southern California! Just venting!

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My very experienced top-of-the-line surgeon from Cedar Sinai did the nerve block himself and punctured both of my lungs while he was at it. That was a big mess.

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I’m so sorry! And I’m complaining about not getting it! How are you doing now? I hope you’re completely healed. I thought about going to Cedar Sinai, but Kaiser offered me the early appointment. My sisters told me it was good they didn’t do it because they didn’t know how to. Hope all is well with you now. Hugs.

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I am sending you gentle hugs and best wishes. I had a double mastectomy with cancerous lymph node removal in my right arm in 2021. I had radiation but no chemotherapy. I'm currently on Anastrazole (generic for Arimidex) for 10 years post surgery. If there is any way I can possible help, please contact me. You've got this!!!!🌷

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