My Husband, My Life, My Love, My Family, My Cancer
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We are nothing if not examples of how cancer treats us all very differently, as do our health systems, treatments and the people around us.The one thing we all have in common ladies is that we are still standing and we jump in to support each other....at various stages of activity and up and down, but here we are.
I think we owe ourselves a huge big congratulations for missing nearly a whole year of our lives and still only mildly upset about it.
Oh and Scotland beat England soundly today in the Rugby six nations for the first time since 1983 - when played in England. We have beaten them on Scots soil more recently. We have a population of 5million and England has 50+ million....small victories and the afternoon of shouting at the TV a) helped my breathing and b) made me forget the cancer for a while!
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Karen,
Nice post and oh so true.
I did have to laugh at the thought of you shouting at your TV and that it was helping your breathing! That's great.
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Mae, I should think not. Hopefully most people who can, eventually do get vaccinated to protect you more.
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Mara, I’ll have to wait for one without polyethylene glycol or polysorbate in the mix. The ER doc said the last time she saw someone with my reaction, they coded. Honestly, I’m more concerned about the allergy, than the virus at this point but will keep informed of new developments.
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Mae - I was upset today to see that 1 in 5 in greater Houston/Harris do NOT plan to get vaccinated. That's a lot in big city. And it makes it difficult for people like you who can not get the vaccine. Made me wonder if there are even more anti-vaxers out by your cabin. And of course El Paso has been a hot spot. Then I read that large portion (over 33% I think) of health care workers here don't plan on getting the vaccine. Methodist offered a $500 bonus to all their employees & one of the conditions was that they get vaccinated. The carrot instead of the stick. Their rate is 92%.
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Hello Ladies. Insomnia checking in.
Lynne50’s~I wish I could wrap. My Arms around you. You amazing woman. You have been on a roller coaster and deserve to find your tx to keep you stable. I don’t like reading ac chemo failed. You hang in there and know you’re loved and good vibes coming your way.Mae ~sound like hg was a little toddler. What’s this. What’s that ? Some days you just don’t want to be bothered!!!
BooBoo~ worried about you my friend. You have enough to worry about, then to deal with alcoholism along with being so sick. I honestly hope 30 days would do it. It’s a slippery slope. I can understand why you would call into question staying with him. Battling a substance with someone gets exhausting. I love you my friend. I am thinking of my special friends tonight that are having a hard time.
Tanya~ hello beautiful
Karen~ Hello! Good to see you. Candy hi sweetheart! Mara~ give yourself a break. You’re too hard on yourself sometimes. I think we all are.
I need sleep. I sure hope I can fall back to sleep. That’s the problem, once I wake up. I can’t fall back asleep.
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Any way that places can offer incentive for those who would refuse to vaccinate is a good thing. Should not have to do this but there is a large movement of anti vaxxers out there and we need most vaccinated. As Mae said, if some would develop a vaccine without the problematic ingredients as well, she could get vaccinated. Realistically, I can expect to be vaccinated later in the year, hopefully by September would be my guess at the rate we are getting vaccines. Next group to get it are elders who are not in long term care. Not sure where I fit in as a cancer patient. I may ask MO about that situation next time I see her. I am prepared to have to wait for it.
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Minus, I’ll admit that I don’t really even want it but will consider it based on MO’s recommendation, if a suitable one is made. I’m not anti-vax but I generally don’t like the idea and had never gotten a flu shot. Fortunately, out near the cabin, people are the leave me alone types anyway. When we were there in November, there were just 17 cases in the county. I’m safer there than anywhere.
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I have struggled from about 3am to a few hours ago with reflux and other stomach issues. The reflux has been brutal. Hopefully tomorrow is a better day. Treatment blues!!
Hugs to all you lovely ladies
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tangandchris, I am sorry you are dealing with the reflux issue. I went through that a long while. Have you been prescribed anything, I used to take rabeprazole when having this issue which helped me a lot. Usually with breakfast to help heal my stomach and esophagus and try to give it a break. MIght want to also ask about a complete digestive enzyme to help your system digest better which could help a lot.
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Candy, I was not at all offended by your post. I understand why you are worried about progression and wonder what it will look like. Progression is different for everyone, but I can tell you a bit about mine. It has never been dramatic for me with the exception of a year ago. The first progression was the initial appearance of liver mets. After that it was new liver mets or increased size and/or number of liver mets after they had decreased in size, been stable, or, in one case, disappeared altogether. I did not feel sick, weak, or in pain. I did experience increase in tumor markers each time. A year ago, was a it different. I guess some might call it an explosion. I experienced intense leg pain, loss of appetite, weakness, nausea, and loss of energy. My spleen was enlarged (causing many of the symptoms ) and full of small tumors. My liver was full of diffuse mets too numerous to count. My CA27.29 rose to 3700. Adriamycin worked quickly to bring things under control - spleen became clear and liver mets decreased in size and number. ( It is rare for bc to spread to spleen, btw, so don’t worry about it.) TMs dropped dramatically. I very quickly felt great again. My latest progression saw an increase in number and size of tumors in my liver, and my liver is enlarged. My TMs have increased again, but they are nowhere near 3700, The increase in size of tumors is cm not mm. Luckily, I still feel fantastic. I would not worry about increased tumor size of a couple of mm. It could just be the radiologist’s reading or the angle of the scan or something.
I do not have to go off Verzenio for the vaccine. Verzenio usually does not lower blood counts like Ibrance does. The lower blood counts can sometimes make the vaccine a bit less effective (but does not cause illness or infection), but that is not a problem with Verzenio.
I don’t know if any of this information helps you. Let me know if you have questions.
Hugs and prayers from, Lynne
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50'sgirl- You may have noticed I deleted/changed my posts to you from yesterday. I was afraid I sounded offensive by asking what your progression looked like. I do not want to offend. Thank you for your response to my posts. My MO said the mm changes may be the radiologist reading the scans and not true progression. And I understand that, and agree with my MO. I just feel like a ticking time bomb. Over 3 years now with stable. Just scared what progression will eventually look like for me. I guess no one can predict how it will look, and that too is scary.
My TM's, which previous MO checked every couple of months and current MO is checking monthly, have always been on the low side. My CA 15.3 runs in the 30's and 40's with a few 50's the summer of 2019. Nothing over the 50's. We continue to keep an eye on it, but I think TM's are not accurate for me. Even with the 8cm original tumor they did not go over the 50's. We used to check CA 27.29 and CA 15.3 but new MO only does the 15.3 one.
Again, I am praying for you and find you a very strong woman. God bless you.
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Oh Mae - I totally understand why you are not getting the vaccine. I just wish everyone around you would get it so we can keep those safe who really can't take it.
And I need to correct my numbers. At the other hospitals in Houston that are not offering an incentive - the nurses/docs/health care workers who said they WOULD get the vaccine is around 58%. So it's 42% who will not.
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tangandchris,
Re reflux on BC drugs -- you may want to see a gastroenterologist, who can do some testing on your reflux and/or prescribe something that's a little bit stronger to help with the reflux. I know none of us wants to take another pill, but really, this might help you. Sleep is so important, and if this is interrupting your sleep, then it's important to try and lessen it. Also, I think on either this thread or another, folks have suggested such things as sleeping on a wedge pillow to keep you more upright. It does help.
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I am a little leery of getting the vaccination, I have a sensitivity to certain things in shots. First round of a abraxane and my throat closed up. I'm a little worried about how it will effect me. I also have to get the shingles vaccine. Which is also given in two shots I've been informed. So this month outta be a gas. !! March early March I scan. I'm
Not really worried about it. But it's hanging over my head like it always does. I can't believe it's been a year. Shocking it goes so quickly.
I hope everyone is doing good. I just popped in to bed and am hoping to sleep well we got
Another 10 inches today for snow. So In one week we had 36 inches of snow. It's crazy. Tuesday they are calling for another storm. Nor'easter we don't need that at all No
Place yo putthe dang snow. Presidents' Day we always get a big snow storm. It usually happens that long weekend. I've had enough of the snow. But winter is winter I suppose.
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Mel - Like I said to Mae, hoping others will step up to the plate so those of you who may have problems with the vaccines don't have to isolate so much. Always grateful to have you hosting this thread. Even though I don't post often, I do read. Fingers crossed that you'll have a good sleep.
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Mel, 50s, Tanya, Karen (and others who responded),
Thanks so much for your encouraging words. Yes, alcoholism is no fun, and I am hoping DH is getting the help he needs. Unfortunately, the statistics for those who stay sober are not good. I will try not to project what may or could happen...story of my life.
I have talked to him on the phone and he appears to be embracing what they are telling him. We’ll see. The support I feel from you all is immeasurable.
Mel, it’s so weird how very differently we each react to chemo and other drugs. Abraxane is very tolerable for me. I have few side effects, so at least that is going well.
With love
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Hello all.
Well this morning I went and got my hair cut. 8am. Me and hairdresser only ones in the building. Both of us with masks on, of course. It was 16 degrees this morning, but I braved getting out in the cold to avoid the crowds and less chance of getting Covid while getting a non-essential haircut. Frustrating that is how it must be now. But... I did feel good after. Fresh cut. I came home and put on a pair of earrings to celebrate. See, I shower every day and put on fresh clothes, but it is always a T-shirt and sweatpants. No frills. But today I splurged and added earrings with the haircut.
I had a Zoom PCP appt scheduled today too, but 45 minutes after the appt time and still no call or link for the Zoom call I called the office. They screwed up and had down I was coming in person. So, rescheduled for another day-- Zoom.
So, reading and laundry for the rest of the day.
Vaccine--- my hairdresser is under 65, the magic age for getting the Covid vaccine. But not by much at 61 or 62, I think. And she has asthma. And she is around the public doing hair. She said she has not been able to get the vaccine yet, she wants it. She did say a lot of her clients have had the first vaccine--- older clientele. So I pray for her that she stays Covid free.
Booboo- Hug from here.
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Laurie, I am glad you are feeling our support, it is strong.
As far as the vaccine goes, I will likely not receive it for many months due to other countries not allowing ANY vaccines to come to Canada. We are shorted on both the Pfizer due to upgrades at their manufacturing site and not sure why with the Moderna. I have accepted this. I luckily am a wig wearer so haircuts are not an issue.
Candy, glad you are feeling better about yourself and enjoying the haircut.
I had a beautiful walk to the burger joint today. About an hour. It is very cold but not when you dress for it. I love when the snow is cruncy under my feet. It was also quite sunny. I had my cheat weekend food wise so watching my portions through the week.
Not doing much else, wil eventually get to some dusting but playing a game for fun on my phone.
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Candy - I am so glad to see you got a haircut, its been a while hasnt it? My hair is piling up again and we've got WEEKS of lockdown to go yet. I had to start cutting partner's hair because it was growing over his ears and making him uncomfortable and shabby. Enjoy that fresh hair feeling!
Boo - I hope things are turning a corner for good on your home front. That is a lot of emotional burden to manage on top of MBC.
Karen - how are you doing on your new regimen? And how is the snow up there? We have a dusting, but with the temperatures bouncing around freezing and the lack of grit laid down, Im extremely hesitant to go out for my usual walks. That and Im not sure where my snow boots are with the grip.
Mel - I still think its incredible you go a year on scans. That is amazing.
Nothing new here - another week, more lockdown. So bored and unmotivated. I did exercise today so that was something at least. Thankfully I felt like cooking this weekend so we have plenty of good stuff as leftovers, which makes it a little easier.
Take care all!
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Sondra, I feel you about the lockdown. I do wish that stores could open up like bath and bodyworks since we cannot get it online except off the US site which means more money and shipping. Oh well, I can wait for the store to open.
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Good evening everyone,
I am horribly behind as I have been dealing with side effects from the new treatment. I had progression on my December scan, took a month off all meds to boost my blood counts, then started with a clinical trial last Thursday. 3 medications--thankfully staying on Fulvestrant which has mostly been kind, changing from Ibrance to Verzenio, adding an infusion drug, Copanlisib a drug that stops a protein called phosphoinositide 3-kinase (PI3K). Copan requires a 4 hour fast prior to infusion and a four hour wait after infusion to eat. Managing that with Verzenio (which I won''t take on an empty stomach), has been ..... interesting. Thanks to the ladies on the Verzenio thread I am managing the stool issue, but was completely unprepared for the nausea, even though it was discussed. Just crippling for Friday and Saturday, but did start to decrease Sunday and today. I am now chasing snacks to eat just before bed (ugh) which has been just another challenge. I have never done well eating right before bed. Then this evening, just to add icing on the cake, my Mom called to let me know my sister is in the hospital with a heart attack, and will be in the cath lab tomorrow morning. Just shaking my head.
I will try to catch up, but think of you all and send positive thoughts daily.
Moving
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movingsoccermom, I am so sorry to hear about your sister. I hope for her recovery. I am also thinking of you. I am sorry about your progression, this new regimen sounds terrible thus far. Quite a fast before and after the infusion. Hope you get plenty of water. If nausea is a regular feature, make sure they provide you with some ondansetron. It is excellent at killing nausea. Hoping you get a good meal in before your infusion.
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Moving, hoping your sister will have a quick recovery.
Good luck to you with this trial. I'm very interested in it as I'm also on Faslodex & Verzenio and have PIK3. The dual regimin has treated me well so far. That Copan infusion does sound very challenging though not eating 4 hrs. before and after. I would struggle as I do hate having to time meds with eating.
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Movingsoccermom - big hugs coming your way. Take lots of deep breaths as you feel the stress descending upon you. We are here for you
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movingsoccermom- The fasting regime for the Copan sounds hard, esp with adding in the Verzenio issues. Sorry to hear of your sister in addition. Hug from here.
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movingsoccermom,
when it rains, it pours, huh? So sorry about your sister. I hope this new treatment works well for you and that you are able to figure out the ins and outs of the treatment so that it works for you.
Hope each day gets better for you.
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Moving~I am sorry to read about all that you are dealing with. My sister and I are very close. I hope For a quick recovery for her. I hope your treatment starts to ease up. I am thinking of you and sending good vibes your way and your family .
Good Morning ladies. Enjoying my coffee. Looks like snow...
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Movingssoccermom sorry to hear about your progression. Good to know you’ve found support on the vernizio thread. Hopefully your sister will get good care. Sending hugs and hope your way. Take care
Tany
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Received my 2nd Pfizer vaccine shot yesterday afternoon. Arm is very sore (as it was with the first one) and mild muscle & joint aches so far. With so much degenerative disease, I always have joint pain😏. Just a bit worse this am.
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