Starting Chemo May 2017

Hi Beauz! Two weeks on Femara and so far, so good. No side effects and I hope it stays that way! I'm sorry to hear that your "case" didn't come up for discussion last week - the multidisciplinary board meeting had such potential for benefit. Is there a chance that it will come up at their next meeting, or will that be too long a wait? At least you know you'll be seeing your MO next week. I hope that goes well. I'm 4 weeks out from surgery now and I think I'm healing pretty well - I have full range of motion with my left arm, though I still have the occasional jab of pain when I move in a certain way. I'm finding it difficult to remember not to lift more than 5 lbs with my left hand/arm and made the mistake of letting a nurse take my blood pressure on that side! I'm occupying the time freed up by the postponement of radiation therapy to get work done. And it's good that you're filling the time before your MO appointment by focusing on healing - keep up the stretching exercises!

Hugs and Good Wishes to All.

Hi notanisland- met with my MO this morning. He has been busy consulting other oncologists around the country about my case and also discussed my case in a multidisciplinary meeting. He said I can have standard care which is radiation followed by hormone therapy, or I can start oral chemo Xeloda next week and then radiation followed by hormone therapy. I happily accept chemo option. But I can't start next week because we already had next two weeks planned for holiday. So he is happy for me to start chemo on 9th of Jan, which is still within the 8 week optimal window period after surgery. I forgot to ask him how long I will be on the chemo and I don't care about it now. I feel relieved and I can enjoy a two week holiday from tomorrow.

I hope you have started radiation therapy and are taking it easy with your arm.

Best wishes to all.

Hi all.

Thanks for your message, notanisland. It certainly cheers me up. Xeloda works better on TNBC. But I will give it a go. I am glad you are doing well with Femara, healing well from surgery and finally started radiation therapy. The system here is different from yours. I am glad I don't have to deal with medical insurance. My arm is getting better every day from the surgery. I am enjoying a two-weeks road trip by car to the south, sight seeing along the way. Take it easy with your arm and smooth radiation treatment.

Notanisland- glad to hear you enjoyed every minute of your long holidays. Wow, 20/33 rads are done! How do you manage so well? No skin issues? Any fatigue? Feel any pain on your surgery site?

I enjoyed my holiday wandering like a nomad. I am on my first cycle of Xeloda. So far I am alright , just feel a drop of energy. Full course is 8 cycles of two weeks on and one week off.

Best wishes to everyone!

Well ladies, I’ve taken a bit of a cancer break. And can you blame me for wanting to? I’m feeling quite well in healing. Still no improvement in the neuropathy though, which is disappointing. It’s been three months since my last chemo, and they said to give it six months to a year. I thought I’d at least have some improvement by now. The nurse practitioner reminded me that there’s no guarantee it will heal at all.

My taste buds are near normal but I never did get back my taste for sweets, and that’s fine. I’m still losing weight though, surely from removing sweets from my life, not to mention trying to keep myself healthy with my eating. My hair is growing in well. I finally gave up the fake lashes and my brows are nearly normal. By spring I may be game to stop wearing hats. We’ll see. I actually find my stubble kind of cute, but it’s just too chilly to go bareheaded.

I finished radiation on January 4, and I truly think it was a piece of cake compared to chemo. I didn’t have any burned skin till nearly four weeks in, but fatigue was noticeable. Quick afternoon naps worked great for me. The skin irritation was short lived, thankfully. I was quite thrilled for radiation to end simply because it meant my nasty treatment year was over!

Because my cancer was estrogen positive, I’m stuck taking this Arimidex for the next ten years. The hot flashes are nasty, but generally only last about a minute. Still there are many times I feel that I will spontaneously combust! Keeping in mind that I sing at church and therefore sit near the altar, recently my pastor noticed me frantically fanning myself and literally stopped his sermon to tell someone to turn down the heat! Oh my did we laugh over that one! And I told him later not to worry when he saw me fanning because it was just medication induced hot flashes. I was not embarrassed, only amused!

The other side effect is joint pain, which shows itself by going right to my already bad knee and settling in. I’ve already had knee replacement on the other side so I was hoping not to have to do the other one. This may escalate that. But even with these two issues, I’ll continue to take this medicine designed to keep a recurrence far away from me.

Hope everyone else is doing well!

Hi Beauz, MsRobin and anyone still reading this thread!

I finished my 33 radiation therapy treatments yesterday! Yay! I had some darkening of the skin (like a tan) in the treated area, but nothing to complain about. And in the final 3 days there was redness at the base of my neck and up the left side of my neck. No pain. But then it got itchy! My radiation oncologist gave me a prescription for Fluocinonide Cream that worked like a charm, but as it turned out, the irritation had already reached its peak and today the itch is gone. Interestingly, my last 8 treatments were boosters - treating the surgical area of the breast only, so by the time the redness showed up on my neck, I hadn't received radiation to that area for about 5 days. So there's still a possibility that I could develop skin irritation at the surgical site in the next few days. Side effects don't necessarily show up right away. They accumulate, a little like chemo.

I still have occasional breast pain near the surgical site and radiating from the area. Like your doctor, my doctors say that it's normal. Since the tumor that was removed during the lumpectomy was so large, it's possible that there was some nerve damage. But more likely, the nerves are healing, causing the occasional jabbing pain and burning sensation - both of which are getting less frequent. After chemo (but before surgery and radiation) I even started having some pain in my left elbow that sometimes went up the underside of my upper arm. All three of the doctors I mentioned this to (my internist, RO and MO - who said it was probably a side effect of chemo) said it was likely nerve pain. It happens less and less frequently now, so they're probably right. The Taxol-caused neuropathy in my feet and hands persists but continues to improve at a snail's pace. The stiffness in my knees that started a week after chemo ended is also still with me - my MO believes it's also a side effect of Taxol.

My range of motion has been 100% throughout. I credit the arm and back exercises that my chemo buddies advised me to start while I was on chemo, preparing for surgery and following surgery. The only drawback to this is that I sometimes overdo and should be more careful about how much I lift and do that could possibly trigger lymphedema. Don't want that!

I've been on Letrozole for over 2 months and so far, so good. I am grateful not to have the unbearable side effects that have caused some women to reject hormone therapy, but I am gradually gaining weight - a half pound at a time!

At end March I'll be seeing my MO for a 3-month visit. Afterwards, I'll meet with the clinical trial nurse from our University Cancer Center to take labs, measurements and vitals that will be submitted to a the Alliance for Clinical Trials in Oncology for participation in a study called BWEL - Breast Cancer Weight Loss Study. This is a randomized long-term trial that will evaluate the role of weight loss in adjuvant treatment of overweight women with early stage breast cancer. (Not that I consider my Stage 3A or 3B cancer "early stage.") As a supporting physician of clinical trials, my MO will monitor me for the study every 6 months for 3 years, then once a year for the following 7 years. It is known that being overweight can contribute to the onset of breast cancer; this study will track whether weight loss can help to prevent recurrence.

In mid-April I'll have a 3-D mammogram and a baseline MRI, which my surgeon will review with me a week later. Hopefully at that visit she will also schedule removal of the port used for chemo (and sometimes now used for blood draws). Until then, I continue to go into the chemo clinic for a port flush every 4 weeks.

I see my RO for a 4-month followup in early June.

Sorry for this lengthy post. it's been a while since I logged on, so I had lots to tell you! And it's so good to hear that you're doing fine! I'll keep checking for your messages and posting whenever I have more to update. Stay Happy & Positive, and Be Well!

Happy Valentine's Day!

Hi to All,

Hope everyone is doing well!

Sounds like treatment is moving along for you, Beauz! Like your experience with Xeloda, I'm finding Letrozole to be manageable - my knees are very stiff in the morning and when I get up after sitting for a while. I am also gaining weight, which in my case is NOT a good thing. I've got to be more disciplined and watch what I eat, limit my food portions and exercise more! I no longer have the excuse of certain foods being unappealing, since I've recovered my sense of taste. I still have chemo-induced neuropathy in my feet and fingers, though it's tolerable. I got a "thumbs up" from my MO at my 3-month visit, but I'm sure my surgeon will notice the pounds returning. I'll see her after my 3-D mammogram and MRI on April 19. Won't see my RO until early June.

I had a total of 33 radiation therapy treatments - 25 to the whole left breast including mid-line of my chest (to catch the mammary lymph), left axillary area, and left super clavicle with 8 boosters to the whole left breast. I received treatment while positioned on my back with arms raised overhead and my head turned slightly to the right. My MO decided on Intensity Modulated Radiation Therapy (IMRT) because my BC was on the left and radiation could more likely affect my heart. Possible affects on my lungs, thyroid, esophagus didn't come up. IMRT is a technique to deliver whole breast irradiation in patients receiving treatment for left-sided BC after breast-conserving surgery when certain conditions are met: 1) Significant cardiac radiations exposure is expected to be greater than or equal to 25Gy to 10cm3 or more of the heart with 3D conformal RT despite the use of complex positioning device; and 2) With the use of IMRT, there is a reduction in the absolute heart volume receiving 25Gy or higher by at least 20%. (I only understand what that means at a very elementary level! But basically, because your BC is on the right, I wouldn't worry). Keep moisturizing the irradiated skin (3-4 times a day). Aloe vera gel was very effective for me. I also used a petroleum based healing ointment (Cerave) at night but others I know used less greasy moisturizers like Lubriderm and they worked fine. If it itches, ask for a prescription anti-itch cream. It was only during the final 4 treatments that my neck became "burnt" (brown rather than red) and I wasn't even receiving radiation to the neck by that time - effects can show up delayed. But 18 days later I was able to attend a wedding with my neck exposed and the discoloration not very noticeable.

Is your doctor taking you off Xeloda because you're going to start rad therapy? I know it's usual to start hormone therapy AFTER radiation, but because of the amount of residual cancer I had post-chemo, my MO wanted to get me on Letrozole right away and my RO agreed. I've been on Letrozole for 4 months now, and didn't stop while I was having radiation therapy. Will you go back on Xeloda afterwards?

I wish you well! I know it seems like a lot of treatments, but it goes by quickly. And if you can keep the skin irritation under control, it's a breeze.

Hello everybody! Can't believe it's so quiet here. It's May! In a way it's great that no one wants to make a fuss.

Notanisland, thinking of you. How did you go with your recent scans? I am about half way through my radiation. So far so good. I am happily surprised that I feel so well without side effects of Xeloda. Certainly not looking forward going back to Xeloda. I think my MO said I will start hormone therapy after Xeloda. I heard about people having Xeloda and hormone therapy at the same time. I think I will do one at a time.

Hellooo! So nice to hear from you , notanisland!😂. I surf the site every day. You came back just when I missed checking chemo forum. Sorry to hear of your scary moment but relieved that it is benign! I had a tiny lump on the back of my lower neck that flared up for three days after being poked by my GP. She assured me it was a pimple. I felt so jumpy during those three days. Lol! Since the ultrasound and mammo missed to spot your BC, are you thinking of having MRI? My ultrasound and mammogram were inconclusive on my big visible lump. I was only told recently that I have dense breast tissue. My surgeon agreed to request MRI for me when the time comes. Somehow after my radiation treatment, my right breast felt denser than my left. Do you feel the difference? My right arm or shoulder felt tighter as well and letrozole seems to make it even worse. How are you doing with letrozole? Oh, I had bone density scan in July and I have osteopenia. Is your MO monitoring your bone health?

hi notanisland, I hope you speedy recovery from port removal and also hope others will join in when they are ready.

I mostly read long term members' posts hoping to learn from their experience and stage III members' posts. I find that a lot of members having zometa or prolia treatment at the same time of their hormonal treatment. Because of my osteopenia and bone weakening letrozole, I am concerned of my bone health on top of BC crap. My MO only suggested vitamin D and weight bearing exercises. I think I need more than these. My MO said he can't prescribe me zometa or prolia for my bone health because it's not standard. I then raised my concerns with my GP. She said she can only prescribe me prolia and I have to pay full price of $300 for each treatment. I may take this option. I am also thinking entering some trial. My MO is looking into it. I live in a regional city and may have to go to major city for trials. Will see.

I am still on my first box of letrozole. Things seem to be as usual except around day 20 when I started experience random abdominal cramps. On day 26 my cramps became constant all day. Day 27 I rang my nurse navigator about the cramps and told her I would not take letrozole on that day. She agreed, said she would get back to me but didn't. By the end of the day, my cramps abated. Day 28 (yesterday) I felt better, took letrozole and went to my GP appointment which was booked a while ago for unrelated issues. She managed to speak to my nurse and MO's registrar on the phone about cramps. They assured her that it's safe for me to keep taking letrozole and they don't think my cramps have anything to do with the medication. Then my GP took my urine sample, did strip test and said it looks like UTI. She sent it away for further lab tests. She prescribed antibiotics which I haven't started. She also told me to take Ural (main ingredient sodium bicarbonate). I took one and felt better. My GP charged me more than double of what I normally pay for her consultation, at a discount rate I was told. Can't complain!

Hi Ladies! I'm still around, but I don't post often. I developed lymphedema in my left arm, chest wall, and breast and I've been battling some skin problems that the dermatologist thinks (according to biopsy) are related to radiation dermatitis. The kicker? The skin issues are not just in the radiation field - it's basically a rash on my chest, right arm, neck, and legs. The biopsy was done on my arm, which wasn't in the radiation field. Apparently you can have radiation dermatitis in areas that weren't treated. Lucky me!

Other than that, I'm doing well. It's good to hear that you guys are doing well!

It's been 18.5 months since my DX, 13 months since I finished chemo, 12 months since my left breast lumpectomy, 11 months since I started taking letrozole, 9 months since I completed radiation therapy, 6 months since my annual mammogram and a biopsy of my right breast that turned out to be a benign fibroadenoma, 5 months since I had a bilateral MRI that looked clean. Today I went in for my 6-month scans: a 3-D mammogram of my left breast (where I had Stage 3A IDC) and an ultrasound of my right breast (where I have a fibroadenoma with microcalcifications) and my radiologist found "no change" in either. "No change" may not sound like much, but it was music to my ears!

Notanisland, glad to hear from you regularly. Happy for your good scan results. I had mammogram and ultrasound on my right breast in July, all clear. I will have MRI on both breasts in May 2019. So far I am doing alright.

Wishing you all merry Christmas and a happy new year.