My Husband, My Life, My Love, My Family, My Cancer
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I didn’t mention it here yet with some serious discussion going on, but my scans were good. Although my MO over the phone said no new activity, the report on my portal today referred to “tiny indiscriminate lung spots that were also seen previously”. Said rescan in 6 months. I’m sure it’ll be sooner than 6 months.
In other news DH is having a Covid test tomorrow, results running 6-10 days from CVS. He’s had 9 days of on and off stomach issues, headache, and constant fatigue. Not the original symptoms but gastro stuff has been added on. We’re hoping it’s another type of bug but who knows. No symptoms for me, but I did change my MO appointment next week to virtual.
Mae, glad things are looking up for you. Keep on keepin on 😊
Mara, great poster. My state is very divided on masks, so I guess some aren’t opposed to getting peed on!?
Booboo, Hope your MO can explain what you’re dealing with. We hear new terms all the time, it seems like.
Mel, Beautiful pic of your DD. I vaguely remember a pic of you from a while ago and I think she got it from you.
Candy, best wishes to your niece and her recovery. Strange times when you can’t even see her. 🙁
Nicole, My thoughts are with you. I have faith that the next treatment will do its job and give you some quieter times. 🌺
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Rosie, sorry to hear your husband is unwell and having a covid test. Hopefully it is negative and just something else going around. I still don't understand the reluctance of wearing masks when indoors. I guarantee there would not be as many cases in the US if people would just do it and the gov't should be enforcing it. Putting a mask on for most people is not that bad. My goodness, if people cannot wear a mask while inside shopping or elsewhere, how do they put up with clothes that cover the whole body. The more people who cover up with a mask, the sooner this wave of covid would subside. Keep germs in, not so many to be exposed to.
Candy, best wishes for your nieces healing as well
Laurie, what can i say that others have not, hope you get answers soon about your lungs.
Nicole, I also echo what wise people above have said, may the treatment do its job for you.
Just got a letter from my PCP saying she will be retiring in September. I never really saw her except when I needed my anticonvulsant prescription. Will have to ask the cancer clinic if I can get the prescription from them or have to go off them. Unwilling to visit a walk in clinic until there is a vaccine for covid. We will see what happens.
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Rosie- I posted on another thread- Ibrance, maybe- congrats on your good scans. The lung thing is probably nothing. Will have to monitor. Hope your DH is clear of COVID.
mara- I agree with enforcing mask wearing, but it will never come to that. People's "rights" and all that. Can you not get another PCP versus a walk in clinic?
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Rosie, yay for your scans and sorry about your hubs, may he only have a man-cold, lol
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Ok ladies...my MO just called we were on the phone for a 1/2 hour. So she said that she spoke to my IR at John Hopkins...he may be able to get me in for a biopsy (liver) Monday or one day next week. He said that he can do the TACE (not necessarily that day) but that he is not confident that it will completely get rid of the tumors...that its more likely to just shrink them some. He did say I can have TACE done while on Eribulen. Heres the thing... I feel like the bigger the tumors the more TACE more chance of side effects (he personally told me that 3 weeks ago when we spoke) right now my biggest is at 4cm. I am kind of afraid to wait and if the Eribulen doesn't work it will be really big then will need more TACE..etc... Any thoughts??
Also...she told me that she could tell that I sounded very discouraged..and she wanted me to know that she doesn't in any way feel that I am out of options..and that there are at least 3 to 4 more options...also that if we ever get near that point she will tell me and be up front about it. That she would never want any of her patients to spend the short time they have left coming in and out of a cancer center..she wants them to have quality time with their family. She also said I want you to know I am very much on board with looking at and getting you into a trial I just don't feel that right now that is the right fit because of where we are with your disease...she said I think you liver is very good right now and can totally handle the treatments we are looking at and she said my cancer Grade 3 "TENDS" to respond well to Erubilen and Texanes ( which I have heard that from other MO's as well). She was really nice and also said that we will scan after 2 months instead of 3...and also if the Tempus comes back saying another treatment we always have that also to fall back on next.
On a 2nd note and I will cross post so everyone can see...but I just want to say thank you so much to you all for loving and caring about me....seriously...and *great, now im crying again* I literally feel so loved here...
I will take any and all thoughts you all might have for me
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NicoleRod— I really feel you are in good hands with your MO. She is fighting along side with you.
And it seems good that your IR can go ahead with TACE and still move to a systematic chemo.
Now I don’t have liver mets so I am not as knowledgeable as many others here but your post sounds encouraging to me.
Will keep you in my prayers. And let us know what we can do for you.
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NicoleRod,
I am in the same camp as DodgersGirl, your MO is fully engaged and has stated she will be honest with you. She doesn't feel you are without options, or in eminent danger, you have time to see if you can get a good response from Eribulen. I am pro kicking the cancer both systemically and at the site, if the IR thinks you can get a significant result with TACE, perhaps the Eribulen will clean up the remainder.
Exhale for now, I am sure you are feeling like you have been run through the wringer. I am always a mess in the lead up and post testing and MO visits, and sometimes in-between.
- Stacey
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Thinking of NicoleRod and I will say that although grade III cancers do grow fast, I know for a fact that they do tend to respond better to chemo. That is what I told my MO when she told me I have the baddest, most aggressive form of breast cancer IBC, grade III tumour AND HER 2+. I am still here 5 years later, NED in both body and brain. Hopefully what you get knocks its socks off and gives a good quality of life. Glad to hear they will be up front with you as well.
Candy, it is going to be mandated in Canada and I am in total agreement over this. It is time for people to wear masks indoors, on public transit, inside businesses etc. It makes sense and would help keep the inevitable second wave from happening. It would help places feel more confident about opening borders too. I confess I don't want our borders open for non essentials unless the numbers stay down in every country. Masks would get us all there faster. The people complaining are foolish and it is foolish not to do it. If a person was unable to wear it, I am sure there are exceptions. Business should also supply masks in case a person forgets.
On a lighter note....
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Nicole, I can’t speak about liver mets but it sounds like your MO is a great mix of optimism and honesty.
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my husband was walking with my dog tonight and had a bit of a chinwag with a neighbour who knows I'm stage 4 and whom I told to tell anyone in the neighbourhood who asked about me. She reported that 1 of the neighbours came to ask her if I'd left my husband 😀 ... because they hadn't seen me in months and dh was always walking the dog alone so that was their 1st guess
We had a good giggle about that. And the person who wondered if I'd left my husband obviously doesn't know me very well or wasn't thinking straight because otherwise they'd know I would never leave the dog!
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Good morning all
Nicolered your doctor is an amazing support. After reading about others experiences I am happy to see a good outcome after a scary visit.
Moth thanks for the morning chuckle.
I’m off to pain management consult at 7:00 AM no DH bc of Covid. It they will facilitate a zoom call with your family support.
Have a good day allTanya
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Moth,
You are so funny. I wouldn't leave my dogs behind either!
All,
Thanks for your encouraging words. I am looking forward to Monday's visit with my MO to see what next steps are. I do not want to go back on Abraxane, so she'll need to find another drug.
Tanya,
Hope your pain mgmt. appointment goes well. Love the new pic and especially the hat! Looking good lady!
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Thank you all for your words of encouragement. This has been so hard for me. Just one failed treatment after another since diagnosis a year ago. Never had a treatment actually work for more than 3 months.
and now to have new and more mets just so disheartening. Thank you again though..for everything.
Tanya good luck at your appointment today.
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Tanya- In your pocket for today.
Boo-In your pocket Monday.
Nicole- Prayers.
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Tanya— also in your pocket today.
BooBoo1- in your pocket for Monday
Nicolerod-continuing to ride along in your pocket
Hey look. My post resembles Candy’s
Candy678– in your pocket while you pray on which path to take moving forward. I pray you are shown the way.
Moth — as I read your post, I was thinking to myself that I wouldn’t have left the dog... great minds!! Ha ha ha
Illimae— hoping your trial is going well. And hoping you continue to find food you want and those foods are those you can eat. Oh, and remember to hold up your PJs when moving quickly.
My bad news —- air conditioner fan went out yesterday. Repairman here last night (bless him for squeezing us in) but couldn’t fix it. So he is back this morning to see what he can do. NO a/c since yesterday afternoon and heat advisory has been issued thru this weekend.
In a normal world we would have gone to a hotel last night but with Covid19, I am not feeling very comfortable with the thought of being completely out in the wild by living in a hotel right now.
Really hoping the repairman can find parts he needs from a supply store and can get us air.
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Dodgers,
So sorry about your air conditioner! I would not survive long without mine. Temps here have been steady in the 90’s for weeks now, so I’d definitely need to go somewhere. Wish you lived near me because you’d be welcome to stay at my house. Hoping repairman can fix it fast.
Nicole, I meant to write to you to tell you that all of the treatments I had in the first year failed me too. Seems like only the hard-core chemos (Taxol, Abraxane)work for me. But hang in there. There are so drugs to try, and one is bound to work. Prayers that your next one knocks the socks off the cancer.
Thanks to all for pocket duty. You guys are awesome!
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Dodgers- Haha about your post sounding like mine. Hugs.
Wow, no AC!!!! I always worry that mine will go out sometime. My central air is 10 years old now. If it dies that would not be good. I cannot tolerate the heat anymore. Hoping your repairman can fix soon. Tell him you are high risk and don't want to go to a hotel. If it was me, I would be willing to pay extra for him to work the weekend to get it fixed.
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Trumpets blaring prior to my news
The A/C repairman was able to make a new motor fit in my old existing housing inside the house! I am thrilled to report I have cold air filling my house!!
Wasn’t a cheap repair but what a blessing to have a/c restored!! Wrote a check for the repair and tipped the repairman for helping out this MBCer
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Dodgersgirl, so glad you got your AC back. I would not survive without my little wind dirow unit either.
It is hot and humid here as well, I have been out twice, two separate half hour walks. Slathered sunscreen, did NOT wear a wig, just a wet head scarf on my head and a baseball cap over that. Stayed comfortable for most of the way to the grocery store, once it dried and I had heavier items to bring home, I got warm. I seem to handle the heat well surprisingly as I did pass out after a while previously. I also did wear shorts both times, I normally do not do an actual short, more of a capri but SIL wanted me to wear shorts so I did. They make some difference I guess. I do hydrate before and after a walk and would NOT do more than about a half hour at a time. I still am itching to get out so will add a couple of ten or 15 minute walks after lunch. Since the hot and humid is sticking around, I will simply acclimate to it. For farther away places, I will ride public transit. Not going to try to walk super long distances and walking to the hospital may not be a goal in the heat when I have to be in good shape to wait around for infusion.
I also have a CT scan to check for mets from the neck down on Monday. Fingers crossed for stability as I have enjoyed six months between scans.
Nicole Rod , still thinking of you, Tanya good luck with your appointment.
Candy, I hope you find direction for what you decide to do as well.
Mel, hope you have a good day and DD does resemble you ALOT. Both beautiful.
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Whoopie, Dodgers!!!!
I have not heard from 2nd opinion MO--- she told me at Monday's appt that they do tumor board on Thursday and she would present my case and would let me know. I am going to give them until Monday. Then I will message them Monday afternoon to see what they found out. I also have a couple of residual questions concerning transferring care to them and what that will look like if I do it. Then I can make a decision.
Mara- In your pocket Monday as well.
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Mara51506- in your pocket for Monday. Hope your news will be favorable. Reading about your walk to the store this morning wore me out. Think I need a nap!
I think a nap is coming now that the house is cooler. It was an uncomfortable night last night without a/c. Didn’t sleep very well.
Candy-678: it really sounds like you approached your dilemma head on and are handling the situation very well. Good for you!!
Moomala— wondering how you are doing?
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Can one or all of you ladies waft some summer my direction? It was moderately warm today (mid 70s) but its back to low 60s and rain on Sunday. Like COME ON. I guess its helpful as I intend to make lentil shepherds pie Sunday for bloods on Tuesday, but still - this sucks.
Nothing new here - got my lower leg bruising checked out by the GP yesterday (night and day difference to the last one!) and its a strained achilles and spider veins. Hey so long as it isn't a blood clot Im ok with it. She wants me to come in for a general physical and blood screen (feel free to take some more!) in the next few weeks as a baseline - the blood test I did end of May last year was apparently lost and never registered. Rode the spin bike today at lunch and I am up to 30 minutes now with a very lightly structured "workout". Feels pretty good, and it helps me sleep better, but the best is being able to walk right into the shower after and go back to the work desk without having to leave my house.
Question for the crowd - my dental office has rescheduled my March cleaning appointment to August 4th. I'd like to see my dentist at the same time, even though my Xgeva has been paused for the last quarter, as he wants to keep tabs on things. Has anyone risked the dentist yet? I was thinking of moving it to early September after my next MO chat. I figure now is the lowest possible risk of the next few months, so may as well go for it.
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Sondra- Dentist--- I am ashamed to say I have not seen my dentist in...um...3 years. Oh my. I had appointment in May, but that is when my ANC was lower and my MO was freaking out. So I cancelled the appointment (my choice, MO did not tell me to). Next available appointment is in September. They were way behind since they were closed (COVID) from March to May. So, we will try again for Sept. I am not having any dental issues. I am on Xgeva every 3 month dosing, and, of course, the low count thing with the Ibrance. Who knows what Sept will bring our area with the COVID thing.
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Dodgers,
Hallelujah on the AC working! No way you could go through another night without it. Happy for you.
Sondra,
I had my checkup and even a crown prep done with no issues. I think I heard it’s extractions that are a problem, but not regular dental stuff. But I could be wrong. Also, I’d gladly give you some of our 90 degrees F weather....too hot for me. Oh how good 70 sounds!
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Sondra, you can have some of my 90 degree or 100 with the humidity and send it your way. It is too hot for my liking as well. I looked up at my building and saw how many people don't have air conditioning. I think it should be required in a rental building when the summer is pretty much ALWAYS hot and humid. Must feel so uncomfortable indoors. Basement apartments may fare better but still would be really really humid. I plan to keep part of my funds in case my AC dies. It came to me from someone my SIL knew and was free but I would just get the same kind of little unit.
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SondraF— going to feel like 100+ tomorrow
I have to figure out how to capture that and ship your way. But you have to send sone of your 60’s and 70’s this way!!!
BooBoo1- thanks. I don’t think the a/c shut down at all today. It’s miserable outside. As many of us have mentioned, I don’t do well with the heat after 20 weeks of chemo in 2017.
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SondraF - I had an abscessed tooth at the end of June, it was loose so had to come out. I had to stop Ibrance immediately and had blood work done every 3 or 4 days to check levels and was prescribed Amoxycillin. A little more than a week later the oral surgeon pulled the tooth. He checked for the "jaw" thing (can't remember what it's called). I had my regular monthly appt. today for labs and injections. I got the faslodex shots but they held the xgeva this month. Dr said to watch the healing where the tooth was pulled and report right away any swelling etc. I was thinking that all is well but maybe I'm not out of the woods yet! I hate going to the dentist but had been going every 3 mos. until MBC came along. Seems even the simple things aren't simple anymore.
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Sondra-I went for a normal cleaning and check-up in June, once my state allowed dentists to open up. I was a little nervous since I'd be in there with my mouth open but my dentist is very professional. I felt comfortable with the protocols they instituted. There are health risks in letting plaque build up and my six month check-up was already two months behind so I thought it worth the risk. My teeth felt so much better after they were cleaned.
I'm enjoying our steamy 90 degree days-I love summer weather and hope you get some soon!
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for dental stuff, if you're not yet using a waterpik I highly recommend it. I have hardly any root plaque to clean when I use it. I stopped for a bit when we renovated bathrooms and the machine was left in the kids' bathroom & really noticed a diff at the following cleaning. Then I bought a machine for each bathroom.
Some people still make a lot of plaque because of mouth chemistry but I think it would still reduce the build up. I think my dentist secretly hates me because there's nothing for her to scrape... lol
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ref Waterpik: if you have had a knee or hip replacement, don’t use a Waterpik.
I didn’t realize this until after purchase. Reading directions mentioned this. DH has a knee replacement. Drats.
Waterpiks are great. My device went elsewhere
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