Starting Chemo September 2015; join us!
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I've been checking in on everyone's progress and I'm hoping those we haven't heard from are doing well.
I have been in a bit of a panic for the last week, due to some ominous blood results. My calcium came back elevated for the first time. I scoured the internet looking for benign causes, but unfortunately none of those line up. I initially thought it might be an overactive parathyroid (which many BC survivors have), but apparently that condition necessarily presents with low or normal phosphorus. My phosphorus is high. In the past when I have had abnormal or equivocal results (spots on bone scan, CT, etc.), my oncologist has told me not to worry. This time she is worried.
I go in for a PET / CT this Thursday. Wish me luck.
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Tessu - don't feel badly about not being ready to return to work. I just started working again a month ago and it's just over half time. I don't know if I will ever be able to work full time again - neuropathy, joint pain, fatigue, immune issues and tissue damage that doesn't heal... for some of us the combination of pre-existing conditions and cancer treatment has left us unable to do so many of the things we used to. In terms of retirement - think about what *you* want. If you do want to retire - embrace that because you've earned it. But if you want to keep the door open to work again, that's ok too. Maybe you just need a little more time to decide - don't forget to be patient with yourself.
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inSF-- sending prayers and much luck to you.☘️
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inSF hoping your abnormal blood results are just a false alarm. Keeping you in my thoughts especially Thursday ((((hugs))))
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in SF - Prayers and good vibes that it is nothing to fear.
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Thanks Tessu, Shelly, El Tigre and all for the well wishes. The results were a good news / bad news situation. The great news is I did not have definitive evidence of metastatic spread to the bones, which was the concern. Yay for that victory!
The bad news is they saw a 2.2 cm nodule in the lungs on CT that wasn't there 6 months ago and it lit up on the PET scan. The increased uptake on PET is right on the border for what they would assume is malignant, so I need to have a lung biopsy. They are making me wait 3 weeks for that, which seems excessively long. Keep sending those positive vibes - I'm going to need them.
Love to all and Ihope you are enjoying nice weather this weekend
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inSF, thanks for the update. Great news on the clear bones!! So sorry for the 3 week wait. Holding good thoughts for you. 🙏
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InSF, good news on the bones!
Good vibes and prayers for the nodule in the lung. I hope you don't have to wait too much longer for results.
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INSF
UHG that is some very stressful times you are going through. I am sending prayers and good thoughts your way. Try to stay busy and do something nice for yourself.
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inSF three week wait to find out what's going on sounds awful! Cannot imagine how stressed out you must feel. Sending ((((hugs))))) and hoping for good biopsy results.
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Hello ladies,
Hope everyone is doing well. I've been doing good. Kids and work keep me busy.
I was taking tamoxifen but then Docs said that chemo put me into menopause so they switched me to femera. That one I did not do so well. So now they want me to go back on tamoxifen.
I have decided I need to get either hysterectomy or have my ovaries removed. Not sure what to do there.
Why do we have to be on this hormone replacement therapy? I just do not understand this. Most of these medications have so many side effects. Tamoxifen causes uterine ca. Idk
If anyone can explain I would appreciate it. Also what are your thoughts total hysterectomy or ovaries only?
Thanks
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Aga- Don't feel bad. I lasted only 5 weeks by force on Letrozole (gen Femara). Having 0 quality of life simply wasn't an option for me despite my ER being 95% and Ki67 75%. I went back on Tamox. I'm 52 and not ready to feel 100 like I was on Letro. I already feel 80 most days.
I think it's harder being stage I in the sense that you have to decide chemo?, hormones?.. It's such a crap shoot. You see folks DCIS or stage I wind up progressing, some with no nodes involved. Who knows why when sx produced clean margins. If you can tolerate Tamox then maybe give it a go? You can always stop at any time. For me it was either do chemo and hormone therapy or stage IV is coming, esp since I am obese and just can't become vegan like and can't exercise with my shot knees so hopefully the hormone therapy does it. Thankfully Tamox doesn't bother me much. I'll have on and off discomfort in the uterus but I have 2 3cm fibroids and 2 1 cm fibroids. Eventually I'll get a hysterectomy as I"m on the 10 year Tamox plan and I'm coming up on year 1 next month. But for now I'm hoping I don't need my left implant pulled. For 3 weeks now there's a small leak on and off. Was on 2 rounds of abx since it started with a raging red breast area and now some days it's 0 leak while others there is noticeable drainage. So that's where I'm at now.
Hope your lung nodule comes out benign inSF. I've had that scare with 1. Can't imagine a 3 week wait. That's insane.
Hope everyone is doing well.
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Aga - I don't have experience with Tamoxifen, but I do take the AI exemestane (generic for Aromasin). I've heard that women can react very differently to the different AIs, so it might be worth asking for another one if you don't want to go back to Tamoxifen. The data do show a very significant risk reduction with hormone therapy. I already had serious joint issues, which I know the AIs can exacerbate, but I didn't notice much difference. I think the neurotoxic chemo (taxol) and early menopause was far more damaging to my joints than the AI has been, but it's hard to know what's what...
As for the oophorectomy, there was no question for me, as I have a BRCA 2 mutation. I decided to do the hysterectomy at the same time, partly because I had benign issues (endometriosis, adenomyosis, etc.) and partly because it was just one more place I could get cancer. I really didn't notice much in the way of adverse effects from the hyst / ooph, probably because I became post menopausal after chemo. I did make sure I had a very skilled and experienced surgeon - the techniques for these surgeries have come a long way, but obviously it's still a risk.
Best ofluck with these difficult decisions - I wish none of us had to struggle with this.
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Hi ladies! It's been so long. Too long! I have been so busy, it makes no sense. I just run, run, run all the time.
I finished the clinical trial Friday and I am so grateful to be done, but anxiety is starting to mount as I begin to climb to the peak of the recurrence period for aggressive luminal b cancers. We sold the cancer house! My house was pink, it was like a bad joke and we bought it 7 months before I was diagnosed and by the end I hated everything about it. We are renting and regrouping and I am so thankful.
Aye, menopause! I am 13 months out of my hysterectomy/oophorectomy. I discontinued the Effexor for hot flashes because I hated that medication and it gave me brain zaps and something like the flu when I quit. The hot flashes returned but with less intensity and usually only at night. Would I do it again? Yes. Is it pleasant? No. If nobody has really told you about they sexual side effects, brace yourself. Not only do I have NO sex drive, it hurts like CRAZY and nothing and I mean nothing makes it better. I've given up. I even tried Rx Scream Cream from my MO and it felt like somebody had lit my vagina on fire.
Still have my tissue expander and port and I had a surgery consult recently to include a tummy tuck to fix my separated abdominal muscles from my twin pregnancy, which leave me at great risk for back injuries. And, I REALLY don't want to have more surgery. 6 weeks no lifting, 6 hours of surgery?!? I don't want to do this so much that I haven't booked the surgery even though I need to since I have great insurance. I am officially a big baby after so much cutting (BMX, port, hsyter, 2 c sections in 4 years). ARGH.
The brain fog is real. I will be interested to see if it abates any after d/c the everolimus. I find myself in a state of confusion frequently.
InSF, I did the hysterectomy for the same reason... Just one more place to get cancer. I am lifting you up in prayer right now. Not today, cancer. Not today.
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Congrats on the house Cajun!!!!
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Thanks, jojo! What do I miss about the cancer house? Absolutely nothing!
I **may** have just emailed my MO to ask to go back on everolimus off-label. By God's good grace the cancer has apparently not spread like wildfire through my bones and organs but I feel as though I've just lost a layer of protection and I don't like it. I must admit that not being nauseous almost 24/7 is appealing, but not so appealing that I want the cancer to come back. Suspect MO will say I'm nuts, which is probably true, but I still want my Afinitor! Give me my poison!
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cajunqueen: I notice your bc was E+ ---- if your MO doesn't restart your Affinitor, maybe ask for an AI (since your ovaries are gone)?
I just cannot bring myself to do any doc/clinic/lab/hospital contact right now. So I made the decision myself to switch back from letrozole to anastrozole to see if that will give some pain relief --- without triggering a rash. (A was stopped for rash that after lots of biopsies was declared not allergy --- and thankfully not bc spread to skin and scalp).I remember mostly stiffness not pain on anastrozole, but have had steadily increasing joint and muscle pain and apparently now also fluid in at least my knees since starting letrozole last Dec.. I've become such a big baby about hurting everywhere, that I haven't even gone to Pilates etc for over a week (and haven't even been walking, yay left knee pain from a newly broken meniscus plate). This despite 24/7 naprosyn plus tylenol (and now stomach meds from irritation from those pain meds). I know I'm supposed to discuss even supplement changes with my MO. But heck, he would either say "no", or "go ahead and try, anyway, so why waste his time. I've got lots of anastrozole left, so don't need a new prescription. Also hoping the anastrozole might allow me to sleep longer than 4 1/2 hours. Wish me luck.
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Hugs to you, tessu. I completely understand just being done with it all. It is so tiring. I am taking Arimidex for 10 years. I have been horribly depressed since I stopped everolimus. I was feeling good beforehand and I'm just hoping it is another unwanted SE of the medication but I would take 24/7 nausea any day over feeling like this.
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I am reading up on everyone's struggles. I have found that the last few months trying to get into survivorship have been tough. I am thinking of trying effexor because I can't sleep with the Tamoxifen and I was warned that I can't continue ambien all the time or it won't work.
For those of you on an AI maybe you could look into Brisdelle (Paxil). Its not allowed for Tamoxifen but probably is fine for AI's. My OBGYN told me it is by far the very best in low doses to help with the menopause extreme symptoms from hormone therapy and oo/hysterectomy. Also there is something called Clonidine that my OBGYN said works very good for hotflashes but not as good as Paxil. The only thing is it made me light headed and I already was lightheaded from tamoxifen so I didn't think it was safe to continue. Gabapentin also helps with sleep neuropathy and hot flashes but it gave me severe memory loss and brain fog so I went off that as well. From what I understand Paxil is pretty easy to tolerate and works well. I even thought of trying an AI again so I could go on it but I am too scared to lose the use of my hands.
Cajun I know it is scary and overwhelming especially with a GENE that promotes BC. Have you looked into Broccoli sprouts and Mushroom extract? there is pretty good science and it isn't that difficult to implement. I do have to take an enzyme like Beano or it gives me gas but otherwise its very easy. I use the jar method for the sprouts. I put the sprouts in a blender with tomato juice and its not bad at all. I call it a Broccoli Mary.
Because one of the tumors I had was almost triple negative I have started to look into anything that is well thought out and would give me an edge against reacurance.
I also am in a rehab center to help with the neuropathy in my feet and hands. My Carpal tunnel surgery only helped so much ( hence why I am not on an AI anymore) but they put me in water therapy in the pool. It has helped immensely. I am not there yet but I continue to do the exercises at my gym and I am hopeful I will get back to my bike soon. I have learned to lower my standards and start small. Work slowly and consistently . I also switched to a comfort geared bike with high handlebars and am riding it one hour a few times a week.
Its a long slog but I decided that I would give myself 16 weeks to do all I can before I schedule a pity party. Hopefully I can make some gains and have my life be more normal by the end of the summer if I just put all my determination into moving forward.
Sending all my best to you gals. Keep posting I appreciate that I am not alone in this fight
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Tessu I forgot to post. A month ago I was on a new brand of Tamoxifen ( my pharmacy switched) I went through extreme itching. I developed a significant rash that scared the crap out of me because it was on my chest. I also had foliculitis in my hair again. I went off the Tamoxifen for two weeks for it to go away and then used an old bottle of tamoxifen from a different manufacturer. Voila no problems. Just letting you know it could be that manufacturer.
Also about the Anastrozole. Its weird how it affects the joints. Do you have a pool you could go and walk in? Also you could ask for Aromisin. It works in a different way I think Steroidal. That was the next thing I was going to try.
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exercise: thanks for posting. It was the letrozole that made me hurt all over; the anastrazole just made me stiff all over after inactivity, not so much pain. But since I switched a couple days ago, the left ear tinnitus from the chemo has worsened. But my blood pressure, which jumped up significantly on letrozole, came back down. Following the situation..
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Oh Tessu gosh it makes me sound like a hypochondriac but I also had right ar ear tinnitus. I can't remember if it was with arimidex or femara I just remember that 6 months period as a blur of symptoms. I didn't ever associate the tinnitus with the meds. It did finally go away once I was off it but it took a few months.
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Yes, manufacturer/brand name makes a difference for so many taking T or AI. Teva is the one that gives the least se for so many, including me. Mayne is also good. You can search for Teva to get the threads where people are talking about/recommending certain brands over others.
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So much less pain on anastrozole! And my blood pressure is normal! Am planning to get a blood test for estrogen (estrodiol?) measured after a month or so, to make sure the lesser SEs don't mean the drug isn't blocking estrogen like it should. Meanwhile, plan to enjoy summer as much as I can!
Wishing everybody here a good week
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I second Artista on the Teva brand of Tamoxifen. I noticed some SE but not as much as other describe on different brands.
I have been on Letrozole for about 2 months and still on lupron shots. Every once and awhile i get radiating joint pain that last a few days, I think it has to do with being on AI's and getting the Lupron shot since it occurs after a few days of the shot. I take IB proferen or aleve and wait for it to pass. I also get acupuncture and deep tissue massages. I have no clue it it helps but i like it
I have been taking Mushroom extract, a blend from my naturopath, as well as green tea extract and the usual vitamins we all are taking I'm sure.
My latest annoyance is I had a head cold, then pink eye, and my lympth nodes were swollen. I saw my ONC and they were going to schedule an ultrasound on my left side of my neck but I haven' heard anything. I think they are going down though, they were only a centimeter, not too swollen.
The lack of communication in my ONC medical office is getting to me. Anyone else have that issue or know how to remedy it other than annoying the hell out of them LOL?
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Wow! A lot of you are still here! It's been a while since I stopped in.
I was checking to see what's being said about AIs over in the hormonal treatment forum. I've been taking letrozole for just over a year now but getting ready to try anastrozole as soon as I finish up the remaining letrozole doses. My MO said the anastrozole might make me less tired and achey all the time. I hope so! I'm really tired of being tired. I figure at least some of the aches & pains are from aging but we shall see.
Best wishes for those of you who are still dealing with challenges from this nasty disease.
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luzeelu --- I just switched myself from letrozole back to anastrozole. Started with anastrozole, was switched to letrozole before Christmas because of a rash -- but when the rash biopsies showed no allergic reaction, my MO wanted me to keep on letrozole. But I couldn't take the pain anymore, still have anastrozole left -- so I switched myself back. After one week, I have significantly less pain-all-over (all muscles, most joints), and my blood pressure is back to normal. Stiffness yes, mornings when I get up, and after sitting for a long time --- but I can do Pilates again without hurting --- without taking pain meds before class! Yay! No difference between those two AIs with respect to hot flashes and sleep problems, and my tinnitus is a bit worse on anastrozole, and my hair seems to be thinning --- but I'm sticking with anastrozole for now --- because the pain is so much less! I hope switching AIs helps you feel better!
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Thanks, tessu.
Not happy to hear about thinning hair since my hair's already a bit thinner these days (from aging, I guess). Glad to hear about fewer aches & pains!
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Hello lovely ladies.
I had somevery good news - I went in for biopsy of a lung "nodule", but the imaging showed it had decreased in size enough that they could rule out malignancy and skip the biopsy. This was actually what I was hoping for when they scheduled the biopsy a full month after the scan. My oncologist offered to move it sooner, but I waited. It was incredibly nerve wracking but it worked out well. Still no definite answer on why the PET lit up, or for either of my abnormal blood results, up I guess it's just the life we lead now.
I Hope everyone is having a relaxing and pain free weekend
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in SF, woo hooooooo! Praise God for this good news.
el tigre - do you have a patient care coordinator with your MO? I got frequent feedback from my clinical trial coordinator but my MO (maybe because he is about my age?) is really good with email and checking in. That must be very frustrating. Cancer is so...much...waiting.
In other news, I am feeling much better now that the Afinitor is apparently out of my system. I'm not sure if it was an emotional or a physical withdrawal, but I feel about back to where I was before.
Hugs to you all!
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