Starting/declining hormone therapy Nov, Dec, Jan 2018
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GH--just a little snippet from last night. We live a little outside Charlottesville and lose power fairly often--twice this week. I told one of my kids I'd been thinking for our upcoming 33rd wedding anniversary, hubs and I should give each other a generator. He said, "That's traditional for 33, right?"
I'm off to attempt my first hair lightening since chemo this afternoon. In other big news, last weekend I started wearing a headband to the gym because my hair is *finally* long enough to bug me on my forehead just a bit, and also started wrapping my head when I get out of the shower. #babysteps
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Congrats Dani on the benign results!! Waiting is the absolute worst, but you made it! I'm glad you have a reassuring answer and a solid plan in place going forward for observation. I can completely relate to the feeling of wondering should do/should've done a BMX simply because I had, like you, NO IDEA I would freak out and worry and have so much anxiety this far out. I miss having any type of peace of mind. Granted we are all still in that first year-ish range so I think Ingerp is right and that as we get more scans under our belt and a few years we will find our footing again. Fingers crossed. Again, am so relieved and happy for you that your results were clear. And throwing my 2 cents in, I like the plan to do a MRI and Mammo alternating every 6 months. I'm on that route as well and studies show it's more sensitive in catching things earlier for those with dense breasts. We may feel like wimps, but honestly, we are all warriors. Keep that in mind my friend!
Good luck InGerp with your first salon coloring! Congrats on those baby steps. I'm sorry you had to go through the hair loss nightmare but am happy to hear that it's coming back slowly but surely. May it get a little kick in its return after some new color! Keep those baby steps coming and enjoy the happy boost that comes from a trip to the salon. I'm sure you will look stellar!
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Thanks everyone for the super awesome encouragement and cheers for my recent Zoladex answers. The relief has been extraordinary and of course the cake was a delicious reward. I just have to get through this phase where the med is still IN and affecting my system. Whenever I am off of the Prednisone the neck swelling and pain in my throat, ears, and trouble swallowing returns with a vengeance. I wish I knew when that "date" would be, but sadly no one can say and I'm guessing it will be awhile. It's no fun but at least there will be an end point to this .... eventually.
My MO has been VERY communicative this week. They NOW want to see me 9/3 at the end of her day so she can spend EXTRA time with me, instead of wanting nothing to do with me and being fine with me coming in sometime in late Oct. I wonder why??? SMH. I guess my PDF and documentation was "helpful" plus they have now heard from the Allergist that yes, I'm allergic to Zoladex and not a nut case.
Someone asked what's next (sorry I've forgotten who), but unfortunately, with me being allergic to the ovarian suppression this definitely puts a big hurdle in my endocrine treatment to prevent recurrence/mets. It's needed in order to take any of the post menopausal meds. It's a bit frightening honestly. My MO has stated that w/o therapy I have a 28-35% risk. There is Lupron, as an alternative, but I am beyond hesitant to try it after this debacle. The Allergist stated that re-exposure could be much worse than this time around. He did offer a "challenge" route to try for a new med, where I am given 1:1000 of the full dose, wait a full half life of the med, if no reaction, proceed to 1:100 of full dose, wait again, if no reaction, proceed to full dose. However, since these are injectable "implant" meds, I'm not sure if there are oral versions or liquid injections available to try these lower doses. If not, there is likely no way I'm going to try it and then I'm left with.....do I do surgery to remove ovaries etc? Le Sigh. Heavy questions.
That aside, I still have the unknown about my Thyroid mass and waiting for the appt with Endocrinology in Oct to see if it's grown, if I need a biopsy, or more waiting. Next week I have a MRI of my head/neck since when I saw my Neurologist yesterday he was concerned about the swelling, the thyroid, and all of this possibly having un-stabilized my Neurological issues/lesions in white matter from my other chronic illnesses. Hopefully, those scans will be clear and leave me only waiting/sorting out the two issues of Endo Therapy and the Thyroid mass.
Yuck. Even with one answer down, it's a bit depressing to look at the big picture and see all the other balls in the air, but I will keep my eyes on today and enjoy the fact that it's Friday, I have wine, and am planning on watching The Hustle tonight to get some laughs in. I love me some Rebel Wilson and Anne Hathaway!
Happy weekend everyone! May the laughs and peace of mind make it to your neck of the woods whereever you might be! Hugs and healing!
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Oh and dear GreenHarbor -- You stated this so eloquently, "There's still days when I feel unsure of who the new "cancer patient" me is. I haven't totally figured her out yet. Today is the one year anniversary of my lumpectomy and I'm not sure if I should light a candle or celebrate.". So relatable! I say celebrate AND light a candle!
May year 2 bring us all more revelations into who we are "now" and with it some solid peace of mind and comfort in our own skin! Enjoy that cocktail tonight and the DESSERT!
I also second what you said, that everyone here has made this year much easier and a special hug to Wised for starting this thread to begin with.
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(And thank you for letting me crash your thread even though obv my dx was later than all of yours)
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Spoonie-- so happy for you!!! You were right the whole dang time!!!
I have been at the beach for a week with the family got home last Saturday and school started Monday. Oldest grandson stays with us through the week because we live so close to the school. So that means....I'm his chauffer for the school year and that boy is busy!! We are so proud of all his accomplishments but it wears me out!
Dani- congrats on your good news to!
I just skimmed over the 2 weeks I missed. Maybe I'll get an opportunity to read them all tonight when I flexitouch pump.
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Spoonie77 Re: your 'challenge dose' information from that Allergist...I've been reading about this, and 'desensitivization' dosage (like that 1:1000 that you mention) has good results in helping overcome allergic reactions; it's been researched in AI allergic reactions, in fact. My friend is going through some challenges similar to yours, so we were recently discussing this very thing.
Thanks for keeping us all posted on how you're doing.
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Spoonie you take care of yourself and I want to thank you for being such a great source of information and education. You have certainly made my journey a little less scary and a lot less lonely. Big Hugs and hope you have a great weekend.
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hi everyone, I am late to the party but want to catch up and join you all. Age 60, dx in August 2018, bilat mast. surgery end oct, no chemo, oncotype low risk, started letrozole at xmas 2018. I was on hrt 10 yrs., damn, I loved hrt. Great for sex. Letrozole of course started hot flashes, no other se yet. The hot flashes got worse over time, plus spontaneous flushing, sweats at times, day or night. I found a good handheld fan, rechargeable battery lasts 12 hours. Made by Vision Tech on Amazon for $13.
I am attempting to get more exercise to try to counteract the internal heat wave. As to other se's, i was looking at a forum about Femara (letrozole) and was disappointed to read how some people got the joint pain se 2 yrs in. This must mean any side effect can pop up at any time. Blechhh! I think my hair is thinning on the sides, or else it is the power of suggestion. Lol. Well, I will read all the posts as I go. On page 4 now.
Oh yes, someone talked about sex. Lost interest in intercourse now that my vagina is dry and tissues are so thin I now get symptoms like uti and combat that with small doses and macrobid. But manual orgasm still good. My mo sometimes allows his patients to use a vaginal estrogen cream. I am going to ask for it.
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Jujibean this site and various threads will be supportive. I'm doing fine with my AI. Don't love it, but if I get daily exercise I really feel pretty okay. The thread I'm linking below, "I want my Mojo back" has discussions about sexual health, especially related to being on AI's. My MO says that I can stay on my Estradiol cream, which works well for me.
https://community.breastcancer.org/forum/150/topics/69566?page=140#idx_4185
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HikingLady, thanks for the link. I noted yr dx 2018, new primary. I had 3 tiny things in left breast on mri, but i didn't want another biopsy. Right had two tiny nodules along with the 3cm tumor, so mastectomy was best approach. Surgery results showed left was benign, so drs didn't touch my lymph nodes that side. Yay!!
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So the Spoonie saga continues...
My neurologist called today. They scheduled me to come in next week, Thursday to discuss my MRI.
7 months ago when I had my first head and neck MRI with them they called me and said everything was stable/clear and to come see them if my symptoms didn't resolve.
This time I have to go see them.
The receptionist said that he "wanted to meet with me and come up with a game plan, that it was too complicated to go over on the phone." She wouldn't say more even though I asked. All she said to my question is that they had a cancelation and she called me directly and that my dr would fill me in fully at my appt.
Le Sigh.
What do you all think that means? Does that mean they found something? Im guessing so but I don't know for sure and either way I now have to wait 6 days to find out.
I guess I'm nervous but also hoping that maybe there's some sort of another answer for my other symptoms and why they're not resolving now that the Zoladex should be out of my system.
My neck/throat and clavicles are still swollen, but not as badly as they were a couple of weeks ago, Im still itchy and feel burning sensations off & on, still running low grade fevers, still beyond fatigued, still having night sweats, and slowly continuing to lose weight. I can also now feel the newly discovered thyroid nodule where just last month i couldn't.
Ugggh i so wish my health was a simple clear cut story.
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((((((HUG)))))
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Thx EdJ. It's gonna be a long 6 days I think. Meanwhile, my Primary sent me a message and is now referring me to ENT. ..SMH. ...another dr to join Team Spoonie.
I'm going to have to start my own waiting list soon at this rate! I now have oncologists, an immunologist, an allergist, a neurologist, an infectious disease specialist, a endocrinologist, a rheumatologist, a lymphedema physical therapist, an acupuncturist, a physiatrist, a integrative medicine specialist, a oncology social worker, a psychiatrist, and a counselor. I'm beyoonnnd tired of seeing drs. This month alone I've had 13 appts. Had 6 in June, 14 in July and have 11 on the schedule for September as of today, and that doesn't include the ENT referral and any follow-ups/testing/imaging that may be needed for the other referrals. Uggggh. Exhausted already.
Send spoons. Le Sigh.
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Spoonie77: I'm sorry you're going through all that stress. I hope everything goes well for you. Hugs!
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Spoonie- I can't believe you are having to deal with more stuff!!! Waiting is also the hardest part. Big hug and sending good vibes!
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Thanks ladies. Found 2 enlarged lymph nodes on my Left thigh/groin area and 1 really big one on the Right side tonight. Am freaking out. These along withe ones in my neck, clavicle, and behind my ears.....yikes. Tuesday I am calling my Primary to be seen again or going to Urgent Care, plus making a call to my Neurologist to see if I can get news earlier. I also see my MO that day too. Someone hopefully will be able to tell me what the freak is oing on.
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Omg Spoonie!
I hope whatever it is that it's easily treatable. You're right to be seen ASAP. 0 -
I wish I could share the cat that's snoozing and purring on my lap while you wait. He's helped me through some scary shit, that's for sure.
Still sending you virtual hugs, and FWIW including you when I pray. If you're not a prayer person, just pretend I wrote I'm keeping you in my thoughts
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Thanks Wised and EdJ3. Prayers are much appreciated!
Decided to take my big sister with me to my MO appt tomorrow. Need some moral support.
Waiting is just the worst!
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Dang it, Spoonie... you just can’t catch a break, can you?! Glad you’re taking your sister with you to the MO. She can hold your purse for you while you kick your idiot MO in the shins. ;-) If I was planning your day, I would call your PCP and ask to be seen re the lymph nodes. I think you need someone who knows you, and not an urgent care doc. I would then ask your PCP to call the neurologist and maybe get some answers for you, or an earlier appointment. I would also hold onto the fact that the neurologist’s secretary didn’t ask you to come in the very same day. Sending love, spoons, wine and chocolate!
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LOL @ kicking my MO in the shins. I'll try to be as nice as I can. Hahahaha, I'm sure my sister won't hold any punches, verbally that is. I am hoping my MO honestly had no idea about the issues going on and it was only her nurse, but even if that's the case, still that's an issue too, right? She should know these things and check in.
I like the plan you lay out. Probably will do just that, I have an appt already scheduled to see my Primary on Friday but will call to see if she can see me sooner. I sent her a msg over the weekend letting her know the situation with Neurology and gave them his number so she could speak to him. Also did the same with my MO's patient portal, plus will call in the morning to be sure my dr has a chance to call him if she chooses. I'm also planning to wake up right at 8am so I can call Neuro and see if there is any other info she can give me, maybe she will be more tongue-waggy this time round.
I wish I could on to the idea that they didn't ask me to come in that day, but honestly it normally takes them 4 days to get imaging back from MRI's. Had scans late Wed afternoon and office had them Friday afternoon. It's unheard of for this clinic as they send out their scans to be read. The Tech said I wouln't hear from my dr until Wed at the soonest since they are running a bit behind schedule in getting reports out. So I was shocked when they called me at the end of Friday business. Nurse said they had just gotten my scans a bit earlier and were glad they could reach me instead of having to wait to get something scheduled until after the long weekend. She luckily had a cancellation call in that afternoon for this Thurs and could squeeze me in. That was honestly the soonest he could see me. But maybe like you say, if it was worse then worse, maybe there would have been less time or they would have found a way to see me a day earlier or two, but that would've have been the max possible. Still as it sits, I went from having scans at end of business day, scans sent out and back, phone call, and will have the appt for results completed all in about 4 days and 15 hours. That's uber quick in my 15 years of experience with Neurology.
So....we will see what happens. This week is going to be a doozey. Heading to bed. May the Lunesta Sandwoman be kind to me tonight!!! Glad to have yall in my pockets. Thanks so much everyone for the continue support. Hugs to you all. Will update when I can.
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Uggh, I'm gonna stop hogging this thread with my lastest Spoonie Saga and create a new thread for the ongoing purple squirrel-itis soon. it's probably way past time, thanks for endulging me everyone.
My MO had a copy of my MRI results. Brief convo about them, more to follow with my Neuro on Thursday.
Now I know why I need "a game plan".
Multiple new white matter lesions seen, including brand new areas of concern/lesions in my cerebellum and in my brainstem!! My MRI's had been stable for the past 6 years prior to this. Just 7 months ago, my last scan was stable. Now, it is much much much changed. There is talk, again, of dx of MS.
Worried.
Any thoughts? Other experiences with white matter lesions in the perspective of BC? Anyone know how BC METs show up on Brain/Cervical MRI's? Do they show up as white matter lesions? How are Brain METs dxd or differentiated from lesions due to MS and other demyelinating diseases?
Ugggh, well at least I do know that there is not a tumor on my Optic Nerve causing the vision issues. Some good news with the bad. The little things.
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oh Spoonie, yikes I am sorry this is so hard! Praying you find some good news with the neurologist! Hugs
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Double yikes! And yeah, a game plan stat.
What did your MO say about your lymph nodes? Or did that not come up given the other news?
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Spoonie, this is your thread as long as you need it! Let there be no talk of "hogging" it as we are all here waiting news of you so we can support you. My sweet friend you helped me through rads like no one else. I have no experience with white matter and MS, but it sounds scary. I hope the Neuro can come up with a dx and tx that are effective. Hugs!
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I second what Wised said, Spoonie!! Wishing you answers.....
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Spoonie - I'm sorry to hear of your latest issues. You are not hogging the thread. We are all genuinely concerned about you, please feel free to continue posting here.
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Thanks my friends for the overwhelming support and concern. I continue to be so very thankful for you all. Hugs.
EdJ3 -- My MO appt was a WHOLE-nother crazy story!!! My sister and I had to pick our jaws up off the floor many, many times during it. We were in shock. I'll post the story later today, as I need to run do a few things at the moment and I've already typed up this long post below to keep everyone busy for a bit. Hahahaha. But I'll be back and fill anyone who would like to hear the story of an MO who put her patients care and best interest before her own desire to care for said patient. It's insane, heartwarming, and just shows that are amazing, amazing, amazing people in this world that continue to be selfless and wonderful and when you run into one, you tend to think they are angels in disguise.
In short, though, due to this crazy turn of events, not much was discussed about treatments, my allergy, or my nodes, heck we didn't even get time in for an exam. In all the ways I pictured this appt going, this was never never never one of them.--------------
For the moment, I'm going back to the MS re-revelation. Oddly, since my team (10 years ago @32 and also 8 years ago @34) tried to dx me with MS, due to non-specific white matter lesions occurring, I was calm and relieved to read those words vs see tumor or cancer etc on my report yesterday. My sister though of course was a bit freaked out.
However, those years ago, since I was battling Chronic Lyme Disease hard core and Lyme can also cause white matter lesions, I persisted that MS was not accurate for me and continued to pursue treatment for Lyme. I had a great deal of improvement with my treatments and symptoms, but seemed to have reached a plateau these past 2 or 3 years.
No one really pressured me, as again, my MRI's continued to state they were "non-specific" white matter lesions, meaning these type could be seen in other illnesses/'injuries too. I didn't have any other specific signs of MS then. I was comfortable with the fact that it very well it may turn out I did have MS eventually but that at that time my Lyme symptoms and treatment were my priority. It's well known that MS patients can have Lyme at the same time but that MS symptoms will not be changed by any type of antibiotic or anti-infective medications. Perhaps that's why I've plateaued in the recent past years because the rest of my symptoms were/are due to a form of MS, most likely RRMS (Relapsing Remitting MS)
With these new scans, are much differentiated in just 7 months since my last stable one, I think my old viewpoint has changed. I think I am ready to look at the possibility that yes I do have MS.. .
These new scans are no longer "non-specific", they now show multiple lesions in 3 different specific locations seen most often in MS (like the juxacortical and brainstem regions) and I can find no evidence of these in Lyme cases. This was not the case at any time before in any of my MRI's.
Lyme lesions are "isointense" (pg 473) on T1 weighted MRI images. My new lesions are on T2 weighted images and they are
"hyperintense" (<--this is a really helpful link to reading/learning about MRI imaging and terminology), which from all my Googling last night (lol) it seems that Lyme lesions do not hyperintensify. The lesions on my brainstem and my cerebellum are hyperintesive. Also Lyme lesions do not become much larger than 2-3mm, while MS legions vary in size and are "diffuse" rather than sporadic. I'm not sure of the sizes of my lesions as of yet, but I will be asking tomorrow for clarification.
I found out an interesting fact last night.....the lack of Estrogen can bring on and cause MS attacks in women.
" Low estrogen states such as menopause and the postpartum period favor exacerbations of multiple sclerosis in women with the disease."
Hmmmm, let's think of what's happened since my last scan in Jan???? I was on Tamoxifen and then on Zoladex, much reducing the estrogen in my body. And now, I have multiple new lesions in my brain that are very specific for MS.
Coincidence? I doubt it. Another question to ask my doc.
There will be lots of questions and I am hoping for more testing, probably a Spinal Tap, EEG, Visual Evoked Potentials, and a few labs since none of these have been run on me in over 8 years. Perhaps this will continue to solify the case for MS as well. Maybe not. One big question is about Brain METs. I'm sure if these appeared worrisome for this, it would have been noted on the report. So I'd like the doc to go over differences of how METs appear vs MS lesions appear on imagining so I can put that worry to bed.
Over the past year, I've thoroughly enjoyed reading through the website "The Radiology Assistant" at multiple phases of my Breast Cancer journey and last night I found they had an EXHAUSTIVE page on Multiple Sclerosis too. Complete with many, many, many MRI images of MS, Lyme, Encephalitis, Brain Metastases, and more.
It was SOOOO helpful to see them side by side for comparison. Perhaps this may be helpful to others too. You can find it here: http://www.radiologyassistant.nl/en/p4556dea65db62/multiple-sclerosis.html There is also a good section concerning CT Scans too.
If ya'll are interested they have a very INFORMATIVE and equally as helpful page on Breast Cancer, Bi-Rads, Calcifications, MRI imaging, and Pathology of the Male Breast too. Good stuff.
Anyway, that's probably WAYYYYY more info than anyone of ya'll wanted to learn this Wed morning about MS!!!! Hahahahaha you've all gotten A's for the day and go home early as a reward!
Like I said way before this novel started, I'm doing pretty good all things considered. Sure, it's MS. My brother in law has had MS for the past 25 years. I know the damage and horror it can bring, but for now, I know this is not a death sentence and I know that I am not on a time clock with only months or under 5 years to live. For me, that is wonderful.
Thanks ya'll for listening, for caring, and for continuing to support me along this interesting crazy journey of Purple Squirrel Unicorn-itis!
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Hello all,
Today is my cancerversary. Clean mammogram a few weeks ago. I'm grateful to be alive.
I tried really hard not to fear the worst. Waiting for the results was hard. I miss my dear husband who should have been out there in the waiting room to take me home for some hot chocolate and pampering.
You all have been so wonderful during all this. It takes a lot of support to get through cancer treatment.
Susan
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egregious--so happy and so sad for you. Sending you warm, gentle hugs.
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