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Ibrance (Palbociclib)

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  • tanya_djamila
    tanya_djamila Member Posts: 1,528
    edited August 2022

    SF cakes I was told to eat red meat too for the anemia and absorption. I’m glad you enjoyed the burger.

    Tany

  • weninwi
    weninwi Member Posts: 777
    edited August 2022

    Hello All,

    I've been away trying to keep my mind on other more positive activities, but have read the postings to catch up.

    Had chest and abd CT scan today to follow up a liver lesion that was 0.6 cm two months ago. My MO didn't want to make any treatment changes last time except to repeat scans in 2 months. The lesion is now 1.0 cm. The chest and skeletal lesions (that could be seen) are stable (at least as I understand the radiologist's report). The radiologist wrote the liver lesion "would be amenable to ultrasound-guided sampling as clinically indicated".

    I see my MO tomorrow to talk, I assume, treatment changes. I'm going to ask about microwave or radiowave ablation of the liver lesion. When I asked before about this treatment she said it is available, but she didn't recommend it for me. I do not know her reasons. At my last appt she mentioned possibility of starting Ribociclib, or Fulvestrant, or taking part in a study.

    I've already been on Verzenio and although my lesions shrank or were stable while on Verzenio my nutritional status seriously suffered (low albumin, low Vit D, low B12) and there were changes in the wall of my bowel (thickening), which the radiologist thought was due to drug toxicity. Everything improved back to normal, thankfully, after I stopped the Verzenio.

    Re mouth sores: I've also gotten mouth sores while on Ibrance. I see a periodontist regularly and she likes AO ProVantage gel. She says it can be used up to 5x/day, It's an anti-oxidant, easy to use, and it's available on Amazon. Sores on inner cheek tissue are not fun, but sores/ulcers over bone are more concerning. My last sore was a small ulcer located on the inner lower jaw bone. The periodontist says the tissue here is very thin and since I'm on Xometa there's a risk for bone necrosis. She was concerned enough to Rx chlorhexidine 2x/day for a few days, plus the AO Gel 5x/day. Chlorhexidine requires a Rx and must be used carefully and judiciously. It stains teeth. I soaked a q-tip with it and dabbed it on the lesion instead of doing a swish and spit. The ulcer healed. I continue to use AO gel once a day after my oral hygiene routine at night.

    I lost hair on Verzenio and even more when I started Ibrance. It has grown back somewhat, but it is dry and kinky. I use Aveeno Baby Gentle Conditioning Shampoo. Walgreens used to carry it but no longer, so I order it from Amazon. I got REDKEN frizz dismiss anti-static oil from my hairstylist and it helps somewhat.

    Has any one here worked with a holistic oncologist to explore the full range of adjunctive therapies that can support conventional treatments?

  • sondraf
    sondraf Member Posts: 1,666
    edited August 2022

    WeninWi - ping Santabarbarian a PM - I know she worked with someone extensively and has good knowledge in this area and can probably recommend how to find someone or her own onc. I think she was Stage III, so not quite the same, but she has always praised using integrative oncology alongside traditional treatment. Surely there must be someone in Madison or Chicago who does this type of work.

  • aprilgirl1
    aprilgirl1 Member Posts: 794
    edited August 2022

    Hi all, WeninWI I am sorry that you have mixed results with your recent scan. Keep us posted on what your MO discusses - I agree with asking again about Y90 or an ablation. Re integrative oncology, I have read about Block Center for Integrative Cancer Treatment (or something like that !) in Skokie, Illinois which is near Chicago . You might do a search on bc.org in stage IV and see if anyone has sought treatment at Block.

  • LI77
    LI77 Member Posts: 68
    edited August 2022

    Weninwi, thanks for the suggestion re: mouth sores. I just ordered some AO ProVantage gel from Amazon.

    I'm getting my last Lupron shot on Friday, as I have surgery (oophorectomy) scheduled for August 15. That will be day 1 of my Ibrance cycle. I'm still waiting to hear back from my MO about whether I need to delay the cycle and by how much. This makes me nervous. I know that a few days probably won't matter, but it makes me wonder if it will "wake" my cancer and make it active again.

    I hope everyone is having a good week!

  • rk2020
    rk2020 Member Posts: 697
    edited August 2022

    li77 -Good luck with your oophorectomy. Try not to worry about missing a few days of Ibrance and concentrate on healing from your procedure. Letrozole is doing the heavy lifting. Many of us take breaks from Ibrance without ill effects. Heck, my first 4 cycles were 14 days on and 14 days off and my next scan still showed improvement. Hugs.

  • sondraf
    sondraf Member Posts: 1,666
    edited August 2022

    Pretty sure Santa did a consult with Block.

  • weninwi
    weninwi Member Posts: 777
    edited August 2022

    To All, aprilgirl1 and sondraf,

    Thank you for the encouragement and tips re finding an Integrative Oncology resource.

    Saw my MO today and I'm off Ibrance. So I'll eventually taper off my posting on this discussion board.

    In case anyone is interested and wants to comment......The plan for me is: 1.) Off Ibrance starting now to let bone marrow and blood work normalize in preparation for liver biopsy. 2.) MO will submit approval for Fulvestrant - I think I'll be on this regardless of other treatment choices 3.) Liver biopsy in about 2 weeks - risks: bleeding, infection, pain 4.) Send biopsy for genomic testing (Strata Oncology) to repeat estrogen, progesterone, Her2, and add PI3 kinase to see if mutation is present - about 30-40% have this mutation. Takes about 2 weeks for results. 5.) Repeat bone scan end of Aug to update baseline before deciding on new treatment 6.) See MO after bone scan and genomic results to decided on new treatment. Treatment options presented to me: a.) Alpelisib if PI3 kinase is seen; b.) Everolimus if PI3 Kinase not seen; c.) Progesterone targeted receptor study using Onapristone (a small study at UW Madison and Medical College of Wisconsin - my MO is lead researcher - could this be a conflict of interest in terms of bias?); d.) Immunotherapy study (I didn't note the name of the drug); e.) CDK4/6 inhibitor Ribociclib.

    I did ask about ablation treatment (Y90) and was told the latest studies show it is primarily helpful in reducing large tumors but it doesn't extend survival. Therefore, not an option for me.

    So I'll be off treatment for about 4 weeks unless or until they start me on Fulvestrant. This makes me nervous. Plus all the uncertainty and need to make new decisions. I'm so relieved to have the integrative oncology resources to research while I wait.

    Re insomnia: I also was bothered with insomnia...mostly waking up about 3 am in a panic and not being able to get back to sleep - I could even feel the cortisol surges sometimes. I started taking 1.5 mg melatonin (a short acting and long acting combo) and this has helped. I get it on Amazon. If anyone is interested let me know and I'll post the brand. I also watched the YouTube channel MedCram by Dr. Robert Seheult on Jan 21, 2022 about light and how it affects melatonin levels and the circadian cycle. It's interesting and worth watching. I've been following his advice to get out into the sunlight early in the morning for a few minutes to allow the sunlight to strike the back of the retina and then to turn off my devices by 9 pm or an hour before bedtime, plus keeping a consistent sleep schedule. I think it is all helping.

    I'm so grateful for the support everyone has offered here.

  • sondraf
    sondraf Member Posts: 1,666
    edited August 2022

    Don't panic too much about being off treatment for a little bit while they sort this out. I had about the same amount of time, or maybe even 6 weeks, between coming off Ibrance and going on Lynparza, and had radiation in between and my scans in May were stable. Its a little nervewracking, but better they find the right next step, and the step you want to take, than to prescribe wildly. And hey! take the time to enjoy the feeling of a properly supported immune system!

    You may want to put that proposed trial in the Clinical Trials thread and see what Cure-ious has to say.

  • rk2020
    rk2020 Member Posts: 697
    edited August 2022

    weninwi - It sounds like you have a solid plan and that your liver met was caught early. I know it can be hard but don’t fret too much on the wait. Your body needs some time to flush out the Ibrance. And if you start the Fulvestrant earlier, then that med alone can go a long way towards controlling your mets. Enjoy your “rest” period. I was amazed by how good I felt. I had forgotten what it was like to be drug free. Keep us updated. Not only do we care about you and how you are doing, it can help others by knowing about the experience of those that progressed on Ibrance

    All - Earlier this year someone on this thread posted links about taking melatonin to assist in cancer treatment. Does anyone know how I can search for those links? Or does anyone have those links to share again?

    On a personal note, my son and his girlfriend came to visit for a week in July. It was the first time we met her and I’m happy to say she’s a sweetheart. ❤️ They came at a great time in my cycle so I was able to maximize our fun but dang, I started to crash on day 5 (but I was able still able to fake it) and barely mustered the strength to send them off at the airport. Fortunately it was only fatigue getting me down. It took me several days of rest to recuperate but I was SO glad to see them. Earlier this year with progression to 6 bone areas and 5 liver mets, I had thoughts that this trip might be the one and only time I meet her and her only memory of me would be of me as a cancer mess. Fortunately, Xeloda was the magic wand I needed to make this trip of theirs a success. I am blessed.

  • anntop
    anntop Member Posts: 38
    edited August 2022

    Weninwi, re a holistic approach, one of my MOs is an integrative oncologist in addition to practicing as a gynecological oncologist. (He treated me for my ovarian cancer diagnosed in Feb 2020.) When I was diagnosed with MBC in July 2021, I decided to explore adjunctive therapies to support my conventional treatment of Ibrance plus anastrazole. I would never advise giving up conventional treatments, however.

    Under his direction, I did 10 weeks of high dose vitamin C infusions (50 grams 2 times a week) at an IV center here in Nashville. I've also been using a Traditional Chinese Medicine treatment, medical qigong. Neither are toxic to your system (although you do need a hemoglobin test before doing Vit C, as a small number of people have a mutation that bars them from the treatment.) My outlook is to do all I can to strengthen my immune system, boost the Ibrance and anastrazole, and thereby decrease cancer cells as much as possible. My diet is now heavily plant based, I've cut as much sugar from my diet as possible, drink very little alcohol, exercise every day, and reduce stress by meditation and prayer (and watching much less news.) I take a number of supplements too, like berberine to help lower glucose. At least some of this seems to be working for me, as I'm in remission at the moment.

    RK2020, I posted something about melatonin, which I take in a high dose. There are a number of articles on PubMed, such as

    Melatonin in Cancer Treatment: Current Knowledge and Future Opportunities - PMC (nih.gov)

    Before any of us take any supplements, however, always check to see how the supplement may interact with you prescription drugs. Online resources for this are at places like Drug Interaction Checker - Find Interactions Between Medications (webmd.com).


  • aprilgirl1
    aprilgirl1 Member Posts: 794
    edited August 2022

    RK2020 - so happy you had a wonderful visit with your son and his girlfriend! I am beyond thrilled that Xeloda is working it's magic and you had enough energy that the fatigue didn't get in the way (and your results have been good!). As I make plans for end of summer 2023 I am trying to stay focused on the plans and not the "what-ifs".

    Sending everyone good vibes for a great weekend!

  • weninwi
    weninwi Member Posts: 777
    edited August 2022

    To All,

    I just read a good article about liquid biopsy.

    https://www.healio.com/news/hematology-oncology/20...

    Can't help but wonder why my MO has never ordered this test for me, especially when my scans starting showing subtle changes in the liver in the spring. According to the article it is considered a "viable and attractive alternative to the standard, more invasive biopsy". Patients best suited for liquid biopsy include.....patients "who are a bit older". Instead my MO just ordered repeat scans until the lesion grew to 1.0 cm and she has now ordered a liver biopsy. I'm also off Ibrance now, so that adds to my stress. And I've started to have bone pain..new for me. My MO has laid out various treatment options that we will discuss at my next appt early Sept. An option she has offered is one clinical study that she is the lead researcher on?? An option she did not offer was to restart Ibrance plus changing to fulvestrant. I listened/watched a discussion by four breast cancer oncologists where they talked about when patients stop responding to a CDK 4/6 inhibitor, but are then restarted and respond again - this was referred to as "circling back".

    https://www.onclive.com/view/second-line-use-of-cd...

    I'm beginning to question the care I'm being offered. I'm 73 yrs old and wonder if that is a factor.

  • weninwi
    weninwi Member Posts: 777
    edited August 2022

    A study about breast cancer spreading at night was published in Nature recently:

    https://www.nature.com/articles/s41586-022-04875-y

    and also in a Swiss publication ETHZurich https://ethz.ch/en/news-and-events/eth-news/news/2..."Breast Cancer Spreads At Night"

    "A new study shows that breast cancer metastases form more efficiently while patients are sleeping. This finding, in a study led by researchers at ETH Zur-ich, could significantly change the way cancer is diagnosed and treated in future."

    The Swiss publication allows for readers to comment and a reader left this question:

    "Should metastatic cancer patients supplement with melatonin or not?" A question many of us have.

    One of the study researchers (Nicola Aceto) responded:

    "It is not appropriate for us to provide direct recommendations for patients, as most of our work has been done in the laboratory. Future clinical studies will need to be set up to answer specific clinical questions, such as the one on melatonin."

    I just found this comment written by Lillie D. Shockney RN, BS, MAS, HON-ONN-CG posted on PracticeUpdate.com about this study's findings"

    "We advise our patients with metastatic breast cancer "not to overdo and be sure to get enough rest." Will we be providing different instructions in the future? Although this discovery is fascinating unto itself and profound, it may cause our patients with stage IV cancer, or even patients who were treated in the past for stage 0 to III disease, to start sleeping less. We need to balance such discussions with the risk of heart disease, which remains a leading cause of death for women (and men), development of diabetes, and other chronic illnesses. Patients reading this abstract/article will likely feel alarmed and start taking action on their own before having a thoughtful discussion with their oncologist."


  • rk2020
    rk2020 Member Posts: 697
    edited August 2022

    weninwi - I know of plenty of women who progressed on a CDK4/6 inhibitor and then swapped out their endocrine therapy such as Letrozole for Fulvestrant. Seems fairly common so yes, I would question why your doc didn’t mention that as a possibility. When my bone mets progressed and liver mets sprouted up, I got a liquid biopsy. A liquid biopsy isn’t going to tell you if your new mets switched sub-type but they can provide other helpful information. In my case, the next drug options would remain options even if my sub-type had changed so it made sense to go the less invasive route. I’ve had genomic testing on bone biopsy material (2020) as well as a liquid biopsy this year. Neither provided any actionable information. But it was worth a try.

  • d37
    d37 Member Posts: 73
    edited August 2022

    My MO just reduced my Ibrance dosage from 125 to 100 mg. This is cycle 20 and I’ve been having more fatigue than in the past. She reduced it because of how long I’ve been on the full dosage to see if that helps with the fatigue. My blood work was fine. Has anyone seen an improvement with fatigue from a dose reduction? She said it might help. Thanks for your input! Denis

  • weninwi
    weninwi Member Posts: 777
    edited August 2022

    rk2020,

    You wrote "I know of plenty of women who progressed on a CDK4/6 inhibitor and then swapped out their endocrine therapy such as Letrozole for Fulvestrant. Seems fairly common so yes, I would question why your doc didn't mention that as a possibility."

    Talked to my MO by phone today. I asked about staying on a CDK4/6 inhibitor and switching from Letrozol to Fulvestrant. She said there are "no studies" to support this approach....i.e. her recommendations are based on study results.

    I asked specifically about restarting Verzenio and switching to fulvestrant. My reasoning is that since I did not progress on Verzenio, and I only stopped (my decision) because of accumulating side effects, maybe it would still be effective. Her response was "there are no studies" supporting this.

    I asked if she thought it was the Ibrance or the Letrozol that stopped being effective and asked what she based this opinion on. She just said she thought they both had stopped working - half an answer.

    However, she has included the option of starting the CDK4/6 inhibitor ribocyclib plus fulvestrant, but says this is her last option as it has not been shown to extend No Progression by very much.

    I'm slowly getting a little more savvy about understanding what I'm being told and not told, about how to ask questions, and about how to understand clinical studies.

    My liver biopsy came back ER+, PR+, Her2 low (1+). This is a change maybe. According to my MO it is still considered Negative by the old classification, but the newer classification now assigns a numeric value and 1+ is now "low".

    Waiting for further Genomic results.

    I should hear back from Mayo by Friday if they will offer me an appointment for a "fresh set of eyes" (second opinion) and "discussion of any and all treatment options including clinical trials." I hope and pray I get offered the appointment, but my MO said it would best happen within the next two weeks because I am off all treatment.

    Thank you for your help and sharing.


  • kbl
    kbl Member Posts: 2,904
    edited August 2022

    weninwi, I may be coming late to your question, as sometimes I miss some posts. I’m not sure if you’ve heard Enhurtu was just approved for Her2 low, which means 1+.

    I also was just on a webinar, where Dr. Gupta had a slide about people being on a CDK4/6 and switching it for another, like Kisqali, and I believe he said they have studied that, and it may be a viable option. The webinar was by.Living Beyond Breast Cancer, and they said if you didn’t get to join, they will have it up on their website in a few days.

  • rk2020
    rk2020 Member Posts: 697
    edited August 2022

    wenimwi- Good for you for asking the right questions! I’m in a rush right now but I’m sending a link for you to read. “In this randomized, placebo-controlled trial, there was a significant PFS benefit for pts with HR+/HER2- MBC to switch ET and receive ribociclib after progression on CDK 4/6i.“

    https://ascopubs.org/doi/abs/10.1200/JCO.2022.40.17_suppl.LBA1004

    I look forward to hearing what Mayo says.

  • rk2020
    rk2020 Member Posts: 697
    edited August 2022

    d37 - I had to move to 100 mg and then 75 due to low ANC but I also had numerous other side effects on 125. Fatigue was better on 100, other side effects went away. Felt MUCH less fatigue on 75 but after being on it for numerous cycles, the fatigue crept back in and it continued to worsen the longer I took it. But the dose reduction sure was nice while it lasted.

  • d37
    d37 Member Posts: 73
    edited August 2022

    rk2020, thank you for sharing that information. My fatigue has seemed to be cumulative and I’m looking forward to it easing up a little. Denis

  • dancemom
    dancemom Member Posts: 404
    edited August 2022

    I'm worried about being able to stay on this.. I was reduced to 75 after the first 2 tries last year. Then a few months on 75, then off for 6 months for surgery, recovery, and radiation. Went back on 75 and had to hold an extra week. Last cycle the plan was 18 days on 7 off. I did bloods after 7 days off, but ANC was 800 so I stayed off an extra few days. This month I did 18 days on, and will do bloods on Monday, after 10 days off. The fatigue last week was terrible. By day 21 (4 days after I stopped) I was barely able to get through my light day (No work for 3 weeks) and fell asleep before my kids. By the weekend, I was losing words. I'm much stronger today after 9 days off, but I'm afraid of the cumulative effects. I will tell MO I was a little more tired, but no details.. I want to try and get as much out of this treatment as I can stand.

  • cure-ious
    cure-ious Member Posts: 2,854
    edited August 2022

    Dancemom, you could try the 5 day on, 2 day off schedule, which was shown in a clinical trial to have improved/steady ANC levels with less time off with equal efficacy (link below). My ANCs are usually low but OK, or I take another a day or two if they get too low. Good thing is you aren't off for a whole week, let alone longer times. Energy is better, tho it took awhile for the effect of the new schedule change to kick in. Good luck

    https://www.nature.com/articles/s41523-022-00399-w


  • dancemom
    dancemom Member Posts: 404
    edited August 2022

    thanks cure-ous. I will ask about that. I was really hoping the 18 days on 10 off would work as MO and NP seemed so positive about it. I was just really taken aback by the fatigue this round.


  • sunshinedaydream
    sunshinedaydream Member Posts: 35
    edited August 2022

    Dancemom - I hope the fatigue lessens soon. I too struggle with low ANC and had to stop my first few cycles at 75mg early. The first time because I caught a terrible cold and had to hold at day 17 or 18. The second because I was going to have a wisdom tooth removed and happened to have CBC done at two weeks. ANC was 960 so MO had me hold at 14 days and take a week off before dental work and a week after. When I finally got through a full cycle, I had to take 2 weeks and 2 days off due to low ANC. This recent cycle I came in at 1030 after a week off and just squeeked by. All this to say, it can get better and you can continue on. Take it one month at a time!

    I had my quarterly PET on Aug 2. Results were a mixed bag. Some areas resolved, some were stable, one bone lesion showed a slight uptake and the radiologist saw something in my stomach that was ‘probably’ inflammation. It said SUV 4.9, previously 3.3. My previous scan in March said there was no abnormal uptake in my GI/stomach. So I freaked out a bit and asked why the previous report doesn’t mention anything and this report says there was previous uptake. MO couldn’t answer me and said the report says it is ‘probably inflammatory’ and we can scan again in 6 weeks to be sure. She also said even though the one bone lesion showed slight increase in uptake it was not a reason to change treatment. I’m trying not to freak out and hope what they saw was ‘just’ inflammation. At the same time I’m wondering what would cause inflammation and how to resolve it. Anyone else have this noted on a scan and if so, what was the ultimate outcome

  • dancemom
    dancemom Member Posts: 404
    edited August 2022

    sunshinedaydream, 🤞probably. Good news on most of it!

    My insurance won't cover PET scans, so I suppose I'll have more mris, bone scans and nuclear med scans once exchange happens? Not sure how it works, other than Drs all said it's best to stick with whatever tests they did in beginning for comparison. Can't do any of it with TE in place. I'll have to go off ibrance again for exchange. Everything just feels so volitile. Hoping for over 1000 on Monday. (My lowest was 600 on day 25 of the regular 28 day cycle) This TE is not comfortable, and I still need to do some inflations to get it semi close-ish to normal size. Sigh. Thanks for listening.
  • weninwi
    weninwi Member Posts: 777
    edited August 2022

    To All,

    Has anyone tried the Dana-Farber Cancer Institute Online Second Opinion Program? What was your experience? Would you recommend it? Was it worth the $2400 cost?

  • sunshinedaydream
    sunshinedaydream Member Posts: 35
    edited August 2022

    Dancemom - Hoping for good numbers for you on Monday, along with some relief from the TE (had to look that one up).

    Weninwi - I didn’t use Dana Farber’s ‘Second Opinion Program’ (I didn’t know they had an all inclusive package) but I did get a second opinion from them. I have private insurance and they billed for the various doctor’s time to review scans and meet with me, etc. I don’t know if it came out to $2400 had my insurance not covered it. Do you have private insurance and have you checked to see if it would be covered? Also - twas at the start of my Dx, and they initially had the same recommendations as the local community hospital where I had my initial mammogram and other work up scans. I decided I wanted to go to MSK and had a third opinion. MSK had a slightly different approach to the AI (if you are pre-menopausal, they go straight to Letrozole and don’t start you on Tamoxifen and then switch a month or two later once the Lupron kicks in like most Centers do), but they also wanted a biopsy of one of my bone Mets, which the community hospital and Dana Farber had not mentioned. Oddly enough, a day after my MSK consult, Dana Farber called me back to say they initially overlooked the fact that I should have a biopsy of one of my bone met sites. So, in the end, I had three opinions, each very similar but slightly different. I ended up choosing MSK. Dana Farber ended up doing my biopsy because MSK couldn’t get me in right away, so that was one benefit of getting the second opinion from Dana Farber. They also told me I should come back to them for a second opinion when the time comes for a treatment change. I intend to do so. Sorry for the lengthy response, but all that to say, if you can afford it or your insurance will cover it, I’d recommend a second opinion from Dana Farber


  • aprilgirl1
    aprilgirl1 Member Posts: 794
    edited August 2022

    Hi all - hope everyone is having a good end of August!

    Dancemom - how was your appt? I hope the fatigue lessens for you. I am on 75 mg and have been for 1 year and 8 months. I work full time selling real estate which means I work a lot. I do find that by 8pm I am tired and not interested in working on my taxes or tedious paperwork. But then again, I don't generally like to do that work:)

    WeninWi - I saw you post somewhere about circulating tumor cells for cancer patients. My tumor markers have so far never been elevated above normal. However, I am participating in a study at Seattle Cancer Care regarding CTC. I don't receive any feedback but they do take a vial of blood from me. The oncologist leading the research is Dr. Kevin Cheung https://research.fredhutch.org/cheung/en/research....

    Sunshinedaydream - isn't it odd when we read varied comments from one quarterly scan to another? I have had inflammation show up one time and not the next. Overall, your scan results sound pretty good in that most areas are resolved or stable. I think most of our oncologists don't want to jump off treatment if the results are like yours and one spot shows slight increase. Best to stay the course and compare next scan. It looks like you are 2 scans in from starting treatment so overall I think your results are great!

    I have my next quarterly scans in Sept. (sept 14th). I am meeting my new oncologist on 9/16 - hopefully that is a good appt:) My oncologist has been on medical leave. She's probably 48 or 49? Of course I don't know what the situation is. My onc. nurse practitioner told me this week when we had a telemed after my blood draw/fulvestrant injections that my onc. is doing better and is coming back to work but only in research. I am sad she isn't going to continue to see patients but happy she is doing better and GOODNESS KNOWS we need all the smart researchers we can get.

    I am heading out of town to help my parents and then return home and leave the next day for a week in Cape Cod with my husband. We will be visiting friends who live there. It will be fun! edited to add: I always wear an N95 mask when I fly. I have been fortunate to not come down with Covid yet. I am fully vaccinated and boosted and have been closely exposed a few times but have stayed covid free. Hopefully, I stay covid free while we are on vacation.

    Hope all of you are doing great and enjoying these summer days.



  • dancemom
    dancemom Member Posts: 404
    edited August 2022

    Interesting about the Second Opinions program. I couldn't bear any more stress, so against family advise i did not have a second opinion. However, I am in a huge research place and have been told many times that I was "the star" of many interdisciplinary conferences w dozens of people, so I feel i am getting a lot of opinions before each turn of treatment.

    Onc happy with ANC this time, yay above 1000! So schedule is officially now 18 days on, 10 off.

    Aprilgirl1 have a great trip. I am going to attempt to fly next week to help with some parent/family stuff. The no mask thing on the plane and where I have to go is terrifying me. My 85 year old dad and myself will stand out in our kn95s!

    I've been working all along too, with 6- 7 weeks off my main extremely physical job for the mastectomy. I got through all 7 weeks of radiation fine. But now I do remember how hard some weeks were last fall when I was on ibrance before the surgery. And as things are reopened fully now, my schedule is expected to be heavier this fall. I'll have to take a lot of time off for DEIP. Haven't spoken to main work yet because I will do scans first. Those changed everything during my initial diagnosis!

    The paperwork I do for our family business is another story. High fatigue days it is really hard to concentrate and I'm so forgetful. About 6 days post mastectomy I started back at some of that (just the absolute minimum). It was so hard to use the computer with drains in. I haven't figured out who will do that work when I do deip with the hospital stay and longer recovery. It's stuff that MUST be done on certain days. I don't think DH understands how physically unable to anything I will be for a while.

    Scans. I wish good news for all of you. I haven't had any since Nov 2021 before surgery. I was told we will schedule them after next month's appointment. before the surgery currently planned for Nov.

    Sunshinedaydream, haha! TE is that hard lump of a baseball they keep adding saline to, that presses into your chest where a boob used to be. It does help me go to work less self conscious that when I was concave on that side and kept running into the bathroom to readjust the stuffing that was riding up 🤣 It does do its job as a Tissue Expander, stretching the skin so the upcoming boobjob has place to go.

    Enjoy these last summer days! Going to the beach with kids tomorrow 😁😁