Starting Chemo May 2017

Thank you for the well wishes as I FINALLY finished up my chemo! With all the side effects and complications, I thought I’d never finish. Technically, I guess I didn’t, since we cut it short. I’m still walking on a cloud, and much happier than I’ve been in a long while. And now to heal!

There’s no change in the neuropathy and I understand it could take months to see improvement, if ever. I’m quite anxious for my mouth to heal, as I’m so very tired of food tasting off. Two and a half weeks since my last treatment, and there’s very little difference. Does anyone know when my tastebuds will recover?

I tried to do fall garden cleanup yesterday with little success. First off, my constantly running nose without nose hair means stopping every few minutes for a tissue break. Secondly, I didn’t realize just how weak I had become. I couldn’t manage to push a full wheelbarrow through the yard, and the pots full of dirt were too heavy for me to lift and dump out. What a weakling I’ve become! I can see it’s going to take some time to feel normal, and I certainly can’t expect that until after radiation.

beauz I’m with you on everything tasting too sweet. I even rejected the corn on my dinner plate recently. It was sold as “super sweet” and they were sure right. Yuck! I literally cannot stand even a morsel of sweetness. Even fruit is a little dicey, but I make myself eat that. Only meat and eggs taste normal to me, and I wasn’t a big meat eater in the past. I still struggle with carbs like bread and crackers, etc. So gross tasting! I’m anxious for this phase to pass so that eating isn’t such a challenge.

There are many things that I can’t eat because I associate them with my early days of nausea. Mac and cheese is one of them. Shudder. Oranges are fine with me, as long as they aren’t too sweet. I had to stop buying that Irish butter from grass fed cows, because of its strong odor. I know most would say that they love that buttery aroma, but I can’t stand it now.

Has anyone on this thread yet to have surgery? After 5+ months of neo adjuvant chemo and a 5+ week layoff before surgery, I finally had my lumpectomy yesterday! Everything went smoothly. (Though my surgeon was so busy that I didn't have a chance to talk with her afterwards.) The first thing I felt for when I woke from anesthesia was a drain from my left armpit, and there was none. What a relief! All I know from the recovery room nurse is that 4 lymph nodes were removed. I'll have to wait until my followup appointment on Monday to find out more. I'm hoping for clean margins and overall good results from pathology, so I can move on to radiation therapy by the end of the year or beginning of 2018. Hope you are all doing well and wishing you a happy holiday season with family and friends.

Hi Beauz, Waiting is the hardest part, isn't it? I hope you get your surgery date scheduled soon and that your procedure goes well and outcomes are good. My chemo side effects are gradually improving. Definitely manageable. I wanted to go to a craft fair this weekend, but now realize that I should avoid being jostled in the crowd. I don't have much discomfort and no real pain from the two incisions, but an elbow could do a good deal of damage just 4 days after surgery! Will be back to share after my Monday appt. Have a good week!

Notanisland- you are so right about crowds and elbows. But glad to hear you enjoy out and about. Thank you for sharing your experience. Just got the date! Dec7 will be my "boob reduction" surgery day, radiation sometime later. My surgeon thinks I can keep half of my right breast. My lump is on the edge of my right boob, close to underarm. I would love to hear from anyone who had a partial removal of chest wall muscle with their BC surgery.

PauletTeK- I am slowly improving. Feet are still numb, but not as bad. I made bone broth again. After skimming off the fat, I drink it as it is or put a bit of vegetable in to make soup. Thank you for your suggestion. Hope you feel better.

I forgot to say that I haven’t had any improvement with the neuropathy. It’s worse in my feet, but I do have some in my hands and around my mouth. They tell me it can take months to clear up, I just hope it actually does! I’m glad I can crochet but I sometimes struggle with buttoning buttons, putting on earrings or fastening bracelets, and turning pages. My numb feet are bothersome and sometimes hurt. I can’t tell whether it feels better to keep on my feet or stay off them!

They’ve already started me on hormone therapy. I now take Arimidex every day. My MO warned me about bad hot flashes, but it’s no worse than I already have. Perhaps the hot flashes are bad for women who aren’t already in that stage of life, but I’ve been battling them for six years already so it hasn’t changedmuch. These meds can cause joint pain too, but again, I’ve had arthritis issues for years so it’s not much different. I thought I wouldn’t start hormone therapy till later, but they wanted me on it now. My BC is estrogen positive, so I guess this is anti-estrogen somehow.

Msrobin- it's interesting to read the detailed description of your recovery. I am glad you feel better. Gee, your neuropathy seems very severe. Your MO didn't wast anytime to start you hormone therapy. I am seeing my MO this Thursday. I wonder what's in store for me. It seems you have a caring RO and good luck for your radiation treatments. I just noticed that we had same type of tumor, ER+/PR-,HER-, which is not as common as ER+/PR+. I wonder if there's any difference in treating these two types of BC.

This may not be aligned with the chemo topic, but I'm posting on this thread because I feel a relationship to all of you who have supported me and shared your experiences on this BC journey.

10 days out from lumpectomy and sentinel lymph node dissection, and I'm healing well. Unfortunately, the post-surgery pathology is not as good or clear-cut. Following neo-adjuvant chemo my scans looked very optimistic - the large breast tumor and positive lymph node (diagnosed by core needle biopsy in Apr) either no longer showed up or had gotten considerably smaller; thus, I opted for conservative surgery. But the lumpectomy excised a 5.2cm area of tissue scattered with residual cancer, which was also found in 2/4 sentinel lymph nodes. The original tumor was obviously larger than the 4cm estimate (approximated by physical exam, since my BC has never shown well on scans). "Standard of Care" would have been a mastectomy and ALND - removal of some (or all) Level I and II non-sentinel lymph nodes.

Per my surgeon, the decision for me now is to either 1) rely upon radiation therapy to clear any residual cancer there might still be left; or 2) have additional surgery to do the mastectomy and/or ALND. So many decisions to make! The data on radiation alone does not apply to my size tumor and neo-adjuvant chemo. ALND alone or ALND and a mastectomy? If I have a mastectomy, do I want a bilateral mastectomy? Should I have reconstruction? Does reconstruction hamper diagnosis? I'm consulting with my medical oncologist tomorrow morning, a radiation oncologist on Monday, and my long-time PCP on what treatment plan is best for me. I am open to any data, opinions and experiences in order to come to a decision that will give me the most peace of mind and the best possible outcome.

Wish me a clear head and good luck!

*Note: My surgeon did have one bit of good news for me - clean margins! But when I spoke with my PCP, who also received a copy of the pathology report, she said my margins were "almost" clear. The margin on the side of the excised cancer closest to my breast bone measured 0.1 (or .01?). It seems that even criteria for "clear margins" varies.

notanisland, I have no advice for you, but I do want to offer some support. That's a tough decision. I did have ALND (after a lumpectomy + SNB), so if you have any questions about recovery from that, feel free to ask. Best of luck with your decision!

Notanisland- I am glad that you are healing well. It's disappointing that your post-surgery pathology report does not favor lumpectomy. I would pay close attention to how clean the margin is. Could it be possible that the residual cancer scattered out the excised tissue? I would then make a decision from there. It really make me wonder if I made the right choice of surgery. My lump is still palpable, still seems to be attached to the chest wall. I couldn't finish the full course of chemo ( 11/16)…… oh well. I hope your team can help you make the right choice. Good luck!

notanisland. as you know, I opted for a unilateral MX. I didn't have any problems with the MX nor issues with the tissue expanders and I will be going in this week to remove TE and place the implant. My BC was initially IDC and when I pushed for an MRI, they also saw DCIS above it, I opted for MX because I wanted to be sure that they got all of it. I felt like I would never be quite confident that they got it all with a lumpectomy so, I opted for MX. I opted for unilateral as both oncologist and surgeon recommended it BUT, most of all because all of of my research pointed me in that direction (less chance of infection, faster recovery, my age etc). I am now going through genetic testing and if I show BRCA1 I will remove the right breast as well. I am confident in my decision on most days and then other days I wish I would have just removed them both.

There is so much to think about when faced with such large decisions, especially when things don't go in the direction that we thought they would. We've talked before and you are so intelligent, I would go with your gut- follow your instincts, listen to your doctors and then decide.

Prayers as you make your decisions. Love, Melanie

notanisland, your blog is always incredibly on point and I feel so much of what you feel. As you know, prayer changes things and there is absolute power in them. Yep, day by day this detour makes us second guess our decisions, we've all been there. I am believing that your visit with the RO will help solidify your decision. Keep in touch!

Melanie

Hi Beauz, I know what it felt like to hear that pathology report. Thank you for letting me know that I'm not alone, but please know that I wish you weren't having to keep me company. At the time I didn't ask for a copy of the report because I didn't want to see the disappointing results in cold, technical terms, but I will get a copy the next time I see my medical oncologist. After talking with my docs, I'm at peace with my decision. Here's what I did:

After receiving my pathology results from my surgeon on 11/20 (5 days after my lumpectomy and SLND) and hearing from her my general options (further surgery or proceed with radiation therapy & hormone therapy), I decided to consult my medical oncologist and radiation oncologist. She told me there was no rush to make a decision (though I don't think the oncologists felt the same way) and if I chose not to have further surgery, I would see her next after radiation therapy.

My medical oncologist said no more chemo for me and was very definitely in favor of proceeding with radiation therapy and hormone therapy. In fact, he wanted to start me on hormone therapy right away, given the amount of residual cancer that had been left after chemo (5.2cm removed during surgery). He said that the SLND that had been performed and the resulting 2/4 positive sentinel lymph nodes did not indicate a need for further surgery (an ALND and removal of axillary lymph nodes in Levels I & II), because lymph node removal is not therapeutic. Instead, it provides guidance for whether targeted radiation and systemic hormonal therapies are needed. As for having a mastectomy, he said that was up to me and whether I felt I needed it for peace of mind, but that survival rates were no different. The best thing my MO said to me was, "Stage III breast cancer is curable." I asked, "When will you consider me cured?" And he said, very matter-of-factly, "Ten years."

The pathology results had taken me from a guesstimate of Stage IIB to a Stage IIIA or B. The thing with neo-adjuvant chemo is that you never really know. But my MO did send me for new CT and Whole Body Bone scans, which came back clear.

I met my radiation oncologist for the first time and he explained in even more detail, why he thought I should forego more surgery and proceed with radiation therapy. I believe he said that about 50% have residual cancer after surgery and that treating it with radiation therapy is as effective as additional surgery. Having a mastectomy does not preclude recurrence. He also said that removing more axillary lymph nodes is no guarantee as cancer cells also move through the bloodstream and we have mammary lymph nodes deep in the middle of the chest and lymph nodes above the clavicle in the neck area. Best option is to target those areas with radiation therapy, which I have to have whether I have a mastectomy or not. He also said that while he normally likes to wait til after radiation therapy to start hormone therapy, he understands why my medical oncologist is eager to get me on a systemic treatment asap. I've talked with him about my concerns for followup monitoring because my cancer was so difficult to find on 3-D mammograms and ultrasound scans, yet my requests for an MRI were met with resistance. My RO said that we can do an MRI after radiation treatment is complete as a baseline, and follow it up for a couple of years with annual MRIs. I felt as though someone was finally hearing me.

Ultimately, I did not go with "Standard of Care," which would have been a mastectomy and ALND (followed by radiation therapy and hormone therapy). I started Femara on Dec 2. That's only 5 doses but no side effects so far. Hopefully, side effects won't accumulate because I'm on this aromatase inhibitor for 5-10 years. I've had my radiation simulation and start therapy on Dec 13, targeting the whole breast, axillary (underarm) lymph, mammary (mid-chest) lymph, and neck. I'll have 33 treatments, finishing on Jan 30.

Coming to this decision was made easier for me with the experience and guidance of my oncologists. (My surgeon and primary care physician talked options but gave no advice.) Now I feel I can move forward. Talk to everyone and gather information based on their research, experience and best outcomes. Weigh the pros and cons and make the decision that is best for you. I'll be waiting to hear from you!

Notanisland. Wow, what a description of all you had to think about and decide on! I am glad you and your team came up with a plan that you feel good about and now you can go on to the next step. I am taking Letrozole and haven't really had any bad SE's. Please know that I am cheering you on!

Melanie

Hello ladies! Sorry I've been quiet, but radiation and Christmas prep is keeping me hopping! The kids and grandkids are coming tomorrow for our celebration and I think I'm ready. Normally we go to Detroit to see the whole family for Christmas but that will be at the end of my radiation, and I fear I'll just be too weary to enjoy it. I'm about three weeks into the treatment and having no issues other than a little mild fatigue. No skin problems to report yet, but they assure me I will eventually.

My chemo recovery is going well, two months out. Some lingering mouth issues and my blood counts are slow to climb back up. My hair is coming back nicely at this point! My peach fuzz is darkening and actually noticeable. The eyebrows and eyelashes are suddenly filling in at a rapid pace!My lashes are thick and about 1/4 inch long, not long enough for mascara just yet. I'm getting a kick out of the eyebrow hairs popping up all willy nilly. I had kept them plucked and groomed for so long that I had forgotten where they really belong! LOL I don't want to rein them in just yet until they fill in.

I'll try to get back soon and do some replies. Thinking of you all!