My Husband, My Life, My Love, My Family, My Cancer
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Yes, addiction is just an ugly monster for sure and I am sorry to hear about the loss both for your friend and his children. We do fight to live longer for sure. The only true blue addiction I had was smoking for a long time, thankfully, I got bad bronchitis during the first chemo and I went for a smoke outside, came in and could not breathe for a moment. That scared me and I flushed the cigarettes down the toilet. Did not start smoking again or go through withdrawal as I was so sick. Best thing that happened to me in hindsight. I could even be around other smokers but never wanting to start up the habit again.
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emac, I too am on Verzenio and am on 100mg. The dose reduction has helped although I still have occasional bad days. The good news is that I am NEAD on the reduced dose. I have not had IV chemo yet but know it is my next med. Keep on fighting!
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Hi everyone. I am freaking out right now, Iappreciate any insight or knowledge you can lend me. I have lower right leg pain for few months now. Today, MRI of my fibula results states “aggressive bone marrow infiltration process noted involving 20 cm of the fibulae diaphysis…suspicious of metastatic disease…" it also says about new bone formation and inflammation but no lesion. Ortho recommended to see a bone tumor expert. I'll see my Onco this Friday to discuss. What should I expect when I see him? Or what should I expect from here on? What testing, treatment, etc. As I was googling, bone marrrow infiltration points toward Leukemia, too. Any thoughts? Is anybody had this mri results that end up not having met?
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Hi anx789 - I have had an MRI result come back negative for metastasis even in the presence of known active bone mets. I have a spot in my left lower shin that shows up on bone scans and MRIs as suspicious and ultimately I had to do a bone biopsy to confirm it was an area of osteonecrosis, likely from an old ACL repair. Completely benign. Your oncologist I would expect might draw labs and could consider other imaging such as a PET scan that could be more specific for active metastasis activity. I would also suggest the Bone Mets Thread on this same stage IV forum. Those of us there have had bone mets for a while and even just reading through it may give you some of the answers you seek. I hope that helps offer some piece of mind.
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living~sorry for your friends loss. Sometimes there are no answers. So young. What a waste. Addiction Is scary. I thank goodness I’ve never had to tango with that ugly monster.
Mara~Good description!
Anx~ google Is not your friend at times like this. Try to relax as much as you can until you get some answers from your oncologist. It’s makes it harder to fill our heads with what ifs. I’m sending you hugs. The bone Mets thread could be helpful it may have some answers or the ladies might. Wish you nothing but luck. Welcome to our thread. We are here for support.
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Thank you emac877 and micmel. My last blood works was in June 2022, every thing is normal except for elevated Calcium and Ferritin. Is bone biopsy the only way to confirm bone met?
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We finally got rain here! And boy did it rain - went into the office yesterday and as we are right on the Thames you have a good view of weather intensity. Was blowing and driving rain like a hurricane I imagine. Couldn't even see the landmarks across the river for a good 15 minutes. Finally it blew itself out and I spent all evening at the pub with friends which I really needed. Nothing like popping to the bathroom to slug down some lynparza on the downlow though!
Work is causing enormous grief and stress right now so I may need to dip for a few weeks until I get this under control and the mental health ship righted. Focus needs to be on getting out of this place before it drives me completely insane. If I have to ill pull the nuclear option of short term mental health leave but before I do that there are some things I need to try, one of which is just putting cancer chat to the side for the moment.
Candy - glad to hear you are stable!
Karen - I was wondering about you up there in Scotland and with the heat and all and how you were doing. Pleased to see you check in, but not pleased to see you had progression. I hope your next treatment line treats you well!
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Mae - great photo!
Anx- welcome! We’re here for support. make a list of questions to ask your MO. It’s too easy to forget something when you are actually sitting there talking.
Living - addiction stinks and no doubt your poor friend is going through a range of emotions. Addiction also affects family and friends.
My hubs is an inpatient - he had a procedure yesterday to hopefully do an ablation in the right side heart area causing his tachycardia. During the procedure the cardiologist was able to recreate the heart rate issues but determined it was coming from the left side of the heart which was a much more complicated procedure so no ablation was actually done. He is being put on a new med which requires 48 hours of monitoring to assess dosage needs. His heart rate was in the 60s all night so they will drop the dose today to see how he does. Plans are to discharge him tomorrow afternoon.
And I’m finally seeing an Ortho today for knee replacement. Left knee is worse so will start with that one. I hope it’s soon as the pain is unreal.
Wishing everyone a good day. HUGS to all
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Sondra, if work and cancer are stressing you, I choose focusing on balancing work and home. Perhaps taking a board break and talk of cancer in real life for a while would help alot. Hope you find the balance or take the break from work you may need.
I have not wanted to email the stupid property managers again but it has been a month since we have had mail delivery and a couple of weeks with the really stupid keyless entry without a doorknob. I was polite but did point out that I have missed an app't due to not getting the mail, I don't find it easy getting out due to no car. I also pointed out having a door without a door handle is really an accessibility issue and could pose a hazard if for some reason I cannot get out the front. I asked directly is they are just waiting for new residents to move in before they replace the intercom at the front so mail carriers can access the building. I am sometimes afraid to say something but realize that staying silent does not help either. I am always polite despite my annoyance that we, the older residents left are not considered. I also get tired of having to check the back door is locked before bed. The keyless entry does not lock automatically as the old one did.
Well, got a quick email back already. Apparently, not having the mail is the post office fault as they refuse to use the key, suppose it is possible but don't believe the Canada post cannot get set up with opening the door themselves. I don't mind meeting deliveries out front. Apparently, they are looking into the door handle issue. I am going to have to just take their word for it as I am tired of emailing them to be honest. Need to remove that stressor and just add checking the back door is locked before bed and accept it.
For exercise, I may go to the mall by bus, I am bored and don't feel like doing much more. I am looking for some mall walking as that does not make me red faced, may stop at walmart too to see if there are any groceries I want. We will see.
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Goldens- I hope your husband's heart issues can be treated successfully. Also in your pocket for the Ortho meeting. Hopefully you don't have to wait too long to get relief for your knee pain.
Sondra- sometimes stepping back from a number of things will allow you to reboot your thought process.
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Needing some advice now that we will be getting into various holidays coming up. It is my wish to spend things like Thanksgiving and Christmas alone. Not because I am mad at anyone but would prefer to do celebrations on my own. I would still want to see older DB, SIL and sometimes niece if they wanted to go shopping but older DB is resistant. I guess I just need to be upfront about my feelings but I would prefer to get chicken and boxed stuffing that I could add a little mustard too and celebrate with renting movies or whatever, ordering popcorn, just having my own day.
Other option for Christmas would be meeting at Swiss Chalet for a festive special with DB and SIL instead of with 9 or 10 people. My niece and nephews are all adults and have their own lives now. I don't know, advice would be good though.
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LivingIVLife: I am sorry to hear about your friend's son. A lot of the time there is nothing you can do to help. It is painful to watch someone going down and be unable to stop it. A waste of a life and the damage he caused to those women and their children.
mara: your situation is intolerable. Can the PO set up a letter box outside the front door and the dwellers have a key to one of the boxes?
Sondra: I was in a crazy making situation at work once. I would leave messages on my phone at work in the middle of the night at home so I would stop running things over in my head (don't forget to do this, remember to do that, phone so and so etc) I finally took stress leave, came back determined that they would never do that to me again. Fortunately I was able to change jobs within the organization but that may not be an option for you. Take a break from cancer chat too if it helps you get your equilibrium back. We'll know why you are MIA and not worry.
goldens: I hope your husband does well. My DH has had several cardioversion (?? I think that is what it is called) and two ablations. He has been doing really well these days.
Intolight: Congrats on NEAD and may it continue for years and years.
anx789: A PET scan would fine mets. Has your MO suggested that?
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Mara, I’d just be upfront about it. Personally, I’d just say “I’ve been thinking about the holidays and I’d like to go something different this year, just on my own and trying out some food/recipes” or something to that effect.
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Mae, I agree with you, I will just be honest with them.
Elderberry, got an email back saying PO office could use their own key. Until it's restored, checking every week or two on Fridays and just get over it.
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Thanks all for the thoughts and the advice. Reading along if not posting much. Had second Taxol session today which is a long haul at 4 hours in the ward, but very fortunate that I do not have the travelling that some of you have to do. Exhausting for you! Loving Mae’s mountain pics and Mara’s recipies.
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For problems with the door knobs would be very interesting to the fire department. I'll bet they would light a candle under them.
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Holidays has not been the same for me after BC. No more big celebration, simple and intimate celebration with people that care.
elderberry, yes, my oncoproposed a PET scan but I hesitated due to radiation exposure; ortho requested MRI. I probably read the mri results 100x since last night, nothing conclusive, “suspicious “ is the term they used. Will Pet scan have a definitive answer or should I go for biopsy to have a definite diagnosis? I am still hoping that it’s not met.
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HI Mara, is it just the 'day' or the season? Perhaps if it is the day, just let him know you'd be happy to something another day through the season. We rarely do Thanksgiving with my MIL anymore, she likes to be on her own. But Christmas we all like to be together, but not necessarily on Christmas or Boxing day. My DH and I insisted for years on spending Christmas day at home with the kids letting them spend the day opening and enjoying every gift.. We still do now.. even though they are 20 and 17.
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Hello ladies of the living room (lol)
I'm back from my cruise and finally caught up here. At first, I thought I'd try to respond as I read, but that was just not feasible as there has been so much going on. I know I will not remember everyone, but I have read and celebrate or worried or stomped my foot with each of you.
First, the loss of our dear moth. While I expected it, it was still very sad to hear. My deepest condolences to her family, and thanks to her daughter to reach out to us in the midst of her own grief.
Karenfizedbo - glad to hear from you, but sorry for your progression. I hope the new tx is gentle on you.
And a visit from Runor- with good news to go on and live life without meds and follow ups and such. Hurray!
Sondra - do what you need to do to reduce your stress. We'll see you when you come back.
Goldens - hope your hubby is busted out tomorrow. I've been to the WI state fair a few times - it was closer to where I lived in IL than the IL state fair. Later, I spent a lot of time around Oconomowoc, and went to the fair from there.
Mae - your mountain pic was beautiful. I hadn't thought about fire danger for you. Those storms are a blessing and a worry. We had wildfires started by lightning strikes during our storms a few weeks ago., and not enough rain to put them out. We should get 4-5 inches of rain this week, and we need it badly.
Well, shit. I had more responses in mind, but they've escaped me, of course. I'll try to put some pics from my cruise tomorrow.
Waving to all around the room.
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I am so devastated to read about Moth.
I too don't have instagram so thank you Mel for letting us know and thank you to Moth's daughter for informing the online community. May she RIP. I hope she knew how important she was to all of us and am glad she was able to help so many women globally. She was my rock as I followed her blog to enjoy her eloquent and humorous posts. Sending peace and comfort to her family, friends & to us as we cope with her loss & the loss of others here.BTW, as others experienced, the new boards also deleted parts of my history and it cannot be fixed much as i tried, so left it.
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Molliefish It is partly safety, he lives in a condo that has 3 sets of stairs to go up before you get to the kitchen but no railing and a big dog. I have never fallen but do not wish to lose my walking ability and I have terrible balance so railing would be good. I am over so rarely, I don't see them installing any. I also am not interested in a big group of people. My thought is to go to Swiss Chalet, just me DB and SIL for the festive special or something. Something quieter for us. I don't mind Christmas but prefer the quiet now. We will see, we are not exchanging gifts which is fine with me, will still send various cards but I could easy take them to dinner. We will see.
I did take a walk around the neighbourhood, did not make myself pretty, just slapped on a wig and went around after a short load of laundry. It was not at all hot but my face did turn red so it is not the heat doing that but it was nice and nostalgic walking my old route. I did mostly stop walking due to a fall last year but my wellness check, little tiny, brain injured lady who is riddled with arthritis gets out everyday and she serves as my inspiration. She is also the nicest thing ever too. Going to do 3 10 minute walks once I am less full from breakfast.
I had black beans and chickpeas but I am thinking I don't like the texture of whole chick peas, next time, going to make into a paste and fry that in the frypan with a generous supply of garlic. Todays breakfast was pleasant, black beans and chickpeas baked in the breville at 375 for 20 minutes, seasoned with italian, taco and salt. Toppings were wheat brai, cornflakes ground to a powder with queso and sour cream. Other than the texture of the chickpeas even after baking, I am going to use them up by grounding into a paste, may add to future helpings of the refried beans.
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mara, one of my best Thanksgivings was when I was in grad school. I was alone, my family was too far away, and I didn't really have any close friends who were nearby. I ended up fixing a Cornish game hen and probably had some mashed potatoes and stuffing. I think I may have watched football and worked on a quilt that I spread out over my apartment living room floor. It was actually a wonderful day.
Re: your door with the wonky lock/no handle thing - is there a non-emergency fire department number you could call? Could you ask them what they'd recommend as far as getting it fixed? This can't be even NEAR legal. The owners should have a big fat fine slapped on them!
Stay safe, my friend!
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Sunshine, I did get an email back about the handle. I was able to get it open easily today, will keep practicing. Property person says they are working on it. Thankfully the only thing I really need if I ever decide to use it is the garbage can for my unit. Only thing I like about it is if I forget my keys, I know the code to get in.
I agree about celebrating on my own. We don't celebrate all the holidays or birthdays. Told my older brother that though I don't want a gift, grasshopper pie would be a wonderful thing to have.
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Grasshopper or Key Lime pie would always be welcome!
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Mara - I loved Mae's phrasing for a conversation with your DB. I think something along those lines would work well. I agree with others here that you have to do what you feel safe and comfortable doing. Also, Grasshopper pie sounds amazing.
SondraF - It's a tough balance working and managing cancer. I have had to take time away from things also. I've been more active here lately because I'm on a medical leave to finish this radiation treatment. I hope you find the balance you need soon.
Anx789 - I think it's worth a discussion about the PET vs MRI limitations with your oncologist. They are two different beasts, so to speak. The PET is going to find anything in the body that is metabolically active. The MRI is a very specific image of organs, tendons and bones and anything abnormal in them at that moment but does not give any data on activity of the tumor or growth. If your MO is looking to identify what kind of tumor cell it is/or isn't I believe a bone biopsy would be the only way to tell that. I hope you get some answers soon. The waiting was (and is) always the hardest part. Mel's living room is great when you need us to be there for support or as we call it "in your pocket."
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Emac- thank you for explaining Pet v. Mri. I saw my Onco today, he didn’t explain anything about it. All he said was he thinks the radiologist over read the results. He thinks it’s osteomyelitis, which is highly unlikely because i have no sign of infection. He also ruled out leukemia because my lab works are stable except for calcium. He ordered Pet/Ct scan and referred me to ortho onco. The Mri findings were bone marrow edema (BME) and periosteal edema involving 20 cm of my fibula. (That’s long) It’s use the phrase “aggressive marrow infiltrating process noted.” My Onco seems to have limited knowledge about BME or he’s just trying to calm my nerves. Waiting for authorization for now…Worried about my daughter and dog. Thank you for welcoming me here, I usually just browse and read.
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Anx, good luck with your scans and the time leading up to them. It’s got to be very difficult to have some information and no real solid answers.
Another week of rain here slowing down the beach bar progress, oh well. Today, I’m doing a crock pot roast and we’ll take that down the mountain to have dinner with our friend.
Pups are good but we had to get strict on the potty training (we let them run around on their own too much) and fortunately they really enjoy their new crate. The boys are 6 months old now and about 3lbs.
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illimae- thank you, I've been on this journey before and it sucks! Those pups are adorable. We have a 16 yearold terrier mix, I love her very much! We have her since she was 6 months old. Wishing everyone a great weekend!
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mae: Those pups are just so gosh darn cute!! Those eyes melt my heart.
anx789: Hang in there. Getting answers will help. It is the "not knowing" that makes all the anxiety that much worse.
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Anx: the fibula is not a particularly common place for a bony metastasis of breast cancer, especially if you don't have other bone mets. Bone 'edema' (increased signal on T2 series) is not specific, in the same way that technetium uptake on a bone scan is not specific (it might be tumor, but it could be arthritis, trauma, or osteonecrosis as emac mentioned). A definitive diagnosis is most important if this would represent a progression of disease that would make a change in therapy advisable, or If it is causing pain or risks pathological fracture. Biopsy really is the definitive way to make a diagnosis. One alternative is to wait and see what happens (either over some period of time, or with different imaging modalities): depending on your circumstances, 'tincture of time' might be advisable. If you do have a biopsy, and the tissue is cancer, it might be worthwhile discussing next-generation sequencing (WGS) with your oncologist: There can be genetic drift of cancer cells over time, especially under the selection pressures of treatment; and the landscape of "actionable variants" is changing rapidly enough that (even if not helpful now) this might offer insights for therapy in coming years.
As you might be able to tell, my way of coping with uncertainty and anxiety is to intellectualize it, which often leads me to distinguishing between the things I have control over and those I don't. For me at least, that helps "let go" of some anxious thoughts and helps to focus on what I can do to be as happy as possible under the given circumstances.
All of the above is definitely not medical advice, especially since I know almost nothing about your situation. In my experience, making a list of questions (and having someone attend medical visits with you) is very helpful, especially given the intense time pressures that most health-care providers face. Best of luck to you, I'll be hoping this turns out to be nothing important.
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