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🙏🙏🙏🙏

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@kathyoung

Thank you for the quick reply. I thought anything under 2 cm was stage 1. I guess I’ll find out :)how was the pain after your lumpectomy. I have such a terrible time with heavy pain meds (narcotics)
Thanks again.

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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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@myoga

@windyshores Thank you! Three day without pain is what I hope for.

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@myoga just ask your doctor and mention that you want a paravertebral block in the pre-op appointment and any contacts with anesthesia.

I had two separate mastectomies. I had a paravertebral block with both. The first time, I made it clear I did not want pain meds but I woke with a dilaudid drip and vomited all night. The second time I made it REALLY clear to every person I spoke with that I did not want pain meds. I felt totally normal and pain free the second time.

I did have pain following those first days. I used codeine/tylenol combo sparingly (1/2 pill in late afternoon) for a couple of weeks. The second time had much less pain so apparently this varies!

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Wow! Thank you for the information. I will request the block and hope they will provide that. I don’t tolerate pain well and am terrified of the surgery. It tooks me so long to make decision. It’s encouraging to know that the paraverbral block substantially reduces the pain. Thank you!

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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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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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@mistymar

Went through same thing a year ago. My tumor was a little larger and grade 2 but I went with lumpectomy and sentinel nodes. They did give me Tylenol with codeine but I only used it the first day or 2. Didn’t really need it. Only pain was when wraps came off to shower (pressure bra and ace bandage) and that was alleviated with rebandaging. By 2 weeks when they started removing wraps I was fine and needed no pain meds even without the wraps.

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I had lump and 4 sentinel node removals in the same surgery. Only 2 had cancer. My surgeon was able to get clear margins I did 6 weeks of radiation and taking anastrozole for the next 5 years-or 7.
My surgery was May of 2022 and still going strong. Since Al’s take a toll on my bones I am taking fosamax 70mg once a week.
Stage 2. Invasive ductal breast cancer.

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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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@windyshores

@myoga just ask your doctor and mention that you want a paravertebral block in the pre-op appointment and any contacts with anesthesia.

I had two separate mastectomies. I had a paravertebral block with both. The first time, I made it clear I did not want pain meds but I woke with a dilaudid drip and vomited all night. The second time I made it REALLY clear to every person I spoke with that I did not want pain meds. I felt totally normal and pain free the second time.

I did have pain following those first days. I used codeine/tylenol combo sparingly (1/2 pill in late afternoon) for a couple of weeks. The second time had much less pain so apparently this varies!

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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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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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@kblioce

I’m sorry you are going through this! I can only comment on Tamoxifen because I did not take the other drugs you mentioned. First, let me give a little of my background. I was diagnosed in 2014 with Stage 4 breast cancer mets bones. I took Tamoxifen for 6 months. I did lose my hair (which I knew was going to happen and I was ok with that). I have to say I was never sick a single day while taking it. I was tired but that was nothing unusual for me. I’m blessed to say by the end of 6 months, I was cancer free (NED) and have been for 10 years. Prayers to you

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What treatments did you have prior to 6 months of tamoxifen?

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