My Husband, My Life, My Love, My Family, My Cancer
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Happy Thanksgiving to all who celebrate it.
Mae, that is some view. So happy for you.
Golden, that is so true what you wrote. I don’t honestly know what I would have done this year without this group. I am very thankful today for it.
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Happy Thanksgiving ladies Great view Mae. Enjoy everyone !
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Moth, is it really that dangerous to go to Seattle? Is the place in Seattle strictly a cancer hospital, or a general hospital? Is there a cancer hospital accessible to you? I feel very safe at my cancer hospital; they have been dealing with immunocompromised patients for ages and really do precautions well. It has no general ER with covid patients coming in. They give patients a covid test the day before certain procedures.
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So many issues with going over the border when you're seriously sick....medical insurance coverage is not simple for instance. I have some money but it would be easy to bankrupt my whole family if something went wrong. And it's not a 1 day procedure so repeat trips required.
And now because of covid the border is actually closed except for essential travel ... it would suck to get stuck at the border if someone decided it was not essential. I've given up the Seattle idea.
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I understand, moth. We can only do what we can do. You have worked really hard to advocate for yourself all along. Sending you many good wishes and some hugs!
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Late to wish Happy Thanksgiving to all who are celebrating today.
Goldens, I think that was a spot on description of Mel's living room and all who are here.
Sandi, I'm so sorry for your loss and all that is touching you still in addition to your own struggles. Holding you in my heart.
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SandiBeach, I’m so sorry for what your family is struggling with. I don’t have the words, but I am sending a virtual hug.
Mae, that picture is awesome. I hope you enjoyed the wine and dinner.
I’m sorry for anyone struggling at this time. I had a point today where I was trying to help my husband program a radio in his tractor. I was all contorted because it was really high up. I got out, and my legs were extremely weak and I was nauseous for a few hours. I have no idea why. All I can think is that my spine was not in a good position and I was having to crank my neck in a crazy way. Thankfully I started to feel better and was able to carry on with the day.
Happy Thanksgiving.
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KBL,
I have the same thing happen all the time. I think the rapid succession of chemos I was given caused my stomach to get really messed up. I probably have two days a week that I don’t have bouts with nausea. I hope we both can get to the point where it will just fade away. But I’m not holding my breath.
Hope you had a nice turkey day.
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Sandi~another big fat virtual hug. I'm so sorry you're going through all of this. I can relate. My friends poor daughters are lost without their mother. Life can be. Cruel just. Plain cruel. I'm sorry for whoever is having a hard time now. I am feeling the difficult of feeling thankful when there is so much to complain about.
I am thankful for my family, my sweet DH made dinner today with very little help. Some from his son and my dd but he was the man in the kitchen. I know he's exhausted. I looked around and the people I am most thankful for. Who I love dearly. Getting to spend another day with them. So my thankful thing today is my wonderful , loving family. Who I know is always there.
I said at the end of the day I would pick one thing and I have. Hands down it's them. They are wonderfully funny and I enjoy watching them interact. My dd is 25,my Sil,24, ds,23, dss19. They are all close in the age and get along beautifully. It's fun to watch. So I'm thankful to see another thanksgiving.
I'm also thankful for all of you my family online. Our living room of support and caring. A place where everybody cares and feels at some point or another the way you do or have. This has hit 18k postings. Thank you for making this a home away from home. I never dreamed it would do so well. Without you all it would be nothing. So thank you for sharing my living room. love to all of you.
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Booboo, I’m so sorry you struggle with nausea and for what you’re going through. I did enjoy the day after the nausea passed. I hope you had a good Thanksgiving as well.
Mel, I’m so appreciative for this group as well. Thank you for starting it.
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Mel your comment about ‘feeling the difficult in feeling thankful’ rings so true just now! The losses people ( Sandi thinking of you here especially) are suffering are just too much to bear and finding any kind of light is exceptionally challenging. It is good though that we can post here and at least get them out of our heads and down in writing. I think even just the sharing helps although no-one can do anything other than support. Personally, my light seems to shrink to just a tiny glimmer of something that I wouldn’t normally even notice... like my DH cooking without actually loudlypointing out that he was ehh ...cooking!
Advocating for ourselves is also exhausting as others have said. My team are very understanding, but I do get the ‘she’s been reading again’ comment or look often! They know we want to help ourselves, but also that their hands are tied in ways which I suppose I don’t really understand....usually financial I suspect.
Mae, keep posting your wine and view pics....they are also a glimmer for us!
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I wake up and continue on.
Thank you for letting me express my sadness. Your kindness and compassion, even when carrying your own burdens, are comforting.
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Morning all.
Yesterday I moved my "fall" house decorations to my "winter/Christmas" decorations. I had to take several breaks. ??!! Not a lot of stuff. Inside only. Use stepladder for some to reach top of kitchen cabinets or to hang something. But I felt mildly short of breath and slightly nauseous. I certainly do not feel like I used to anymore. KBL- You are on I/L also. Maybe these meds/the cancer just makes us feel like that sometimes. Glad I am not the only one.
Then, I was looking at some of my Christmas stuff. This year, 2020, has been crazy. Isolating. Some, no most, days lonely and quiet. But, also, seems like just yesterday that I had out these decorations last Christmas. Like time is speeding by. I know they say time speeds as you get older. Maybe that is it. Or maybe the cancer. Just feels like wow time is going.
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Hi, Candy. I’m fortunate the nausea isn’t often like it was when I was first starting my journey, since mets are in my stomach. Even before I/L, every time I ate, I felt like I was going to throw up. That has gotten better, thankfully.
I agree time is flying. It’s amazing how fast the years are going. It’s been a year and a half since I started meds and seven years and three months since this journey started that I didn’t know I was on. Every time my doc say we’re only on the first line and we have many more to try, I don’t believe her because we started really late. I am so thankful to be alive and relatively well.
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it’s. Comforting to know there are many lines, but how sick will each make us?? I don’t want more side effects, I want less. Seems each line may have to be stronger. Which could mean more size effects.
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Mel,
I agree with you. And also, the docs seem to dose everyone at the highest dose possible for each line. I don't understand why they don't start lower and then titrate upwards -- it seems you have to complain to get them to cut down on dosage.
In any event, at least there are drugs in the pipeline for many of us. So there's that.
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I agree back! I just wish If they could manufacture a vaccination so quickly. Why not the cure for cancer.? They have made such strides. Well thousands of people die each year of cancer. Isn't that considered pandemic-like? It does to me!!!!! That's perhaps 1 out of 8 people have a chance to get it. Just doesn't make sense this was made so fast and here we are on BCO , when we should have a cure (all the money thrown at it) should have yielded far more results and possible Avenue for a cure. Maybe not one size fits all, but a cure. Shouldn't be that hard, when we saw this turn around with covid, because business were shut down. Should we shut down businesses for cancer? Maybe we would get a cure. Then!!?????? So frustrating,
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Mel and Bev, I agree with you both. I've often thought like you Bev, why start at the highest dosage, make us really sick, and then reduce? It's never made sense to me.
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I concur, not sure why making us sick to the point they have to drop the dose is a thing. It's more likely to make more people say forget it. I am not a patient person with SE and would tend to shut off a treatment than put up with bad SE. That's why I stopped the Perjeta that went with my Herceptin infusion. The combo of those gave me fecal incontinence a couple of times. I told the doctor I would NOT take the Perjeta again. The Herceptin has not cause much digestive distress other than transient nausea for the first few days which I treat with zofran (ondansetron). Digestive enzymes also stopped a lot of gastric issues I used to have as well.
If they could start low, they could see what is needed to keep stable and possibly improve qol for a lot of people allowing them to be active and feel stronger.
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so.... I'll argue the flip side. Usually people need to switch treatments because something else failed them and the cancer grew (or recurred). So I think an argument can be made to go in and hit it hard and fast, esp if it's an aggressive variant.
Also, since tumors can develop resistance, I wonder if titrating up might promote faster resistance: a smaller dose which isn't enough to kill the cells but enough to get a taste & some to figure out how to avoid it in the future
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Moth,
I see your point but, for example, many people in Ibrance (which they always start at the highest dose) just cannot handle the side effects and they have to dose reduce. I've been on Ibrance since August 2019, and have complained about the side effects for a long time, but it wasn't until this month that they finally reduced me. When the NP wrote the script, she said -- oh we really have very few patients who last on 125, and there is no difference in efficacy at the lower dose.
Another example: Piqray. For those folks with the PiK3CA mutation who could take this drug, there have been lots of postings about people who say they are afraid to go on it at the highest dose because of the side effects (I'm one of those people.)
But you do have many valid points. And I think we each need to go our own way on this.
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I have been on ibrance 125 mgs for 50 months now at the end of this month. I take it one week on and one week off. The fatigue is awful. Mouth soreness but I do my napping and get my needed rest. I’ve noticed hair thinning. My hair used to be killer long. It’s still long but a lot is lost daily. I notice especially in the shower. It is weird how we all tolerate medicines differently.
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I tend to be a person who would rather start low vs high myself. Back in 2004, long before cancer, I started having seizures of unknown origin. No root cause could be found, no epilepsy, even stress was ruled out. Initially I was put on an initial Dilantin dose that gradually poisoned me, way to high a dose. I was switched to Carbamazepine, 400 mg controlled release. Many docctors afterwords have tried, for no real reason than thinking I was below therapeutic tried putting me on higher doses or adding other meds. When this happened, I started getting super low BP as these drugs can slow heart rate. Fainting everywhere became a normal part of my life to the point I threatened to quit altogether. I have not had a seizure since being left alone save for when stupid cancer invaded my brain and caused horrendous swelling. Then I had seizures. My neuro onc wanted me on another seizure drug but I flatly refused it. I told her the seizures were actually due to the brain swelling and cancer, not actual change. Turns out I am right because I don't have seizures. Sometimes we just know our bodies and how we react. I also cannot do vitamins as they cause me to feel faint.
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Regarding the high doses: I agree. One of the docs I consulted with actually does something completely opposite: instead of dumping a huge dose in one go over a few hours, he drips a tiny dose (from a fannypack you wear) pulsed over 2 days. More tolerable and can often treat people who cant take a full dose chemo. An outside the box guy. Dr Keith Block.
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I think there’s a balance to be had re dosages and a lot of that is down to your team paying real attention to how you cope. My original MO ( now retired), for my primary cancer 13 years ago, very quickly decided... your veins are crap, so we’ll put in a portocath instead of stressing you out rigging up a cannula every time ( highly unusual then) and we’re going with 6 cycles of chemo instead of the usual 8. I have no idea why.... but he was right. I barely made it to the end of the chemo but coped and the portocath was a godsend.
This time I was dropped from 125 to 75mg Ibrance in short order, which worked for me for 28 months. Now I’m on Faslodex alone on the full dose. I need to have the chat next week with my current MO, who is highly experienced, that my body will likely not cope with full dosages and she knows full well that we need to be mindful that keeping me standing and functioning is the aim. Confident that dosages will be adjusted pretty quickly should I need it but we’ll see!
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My doc dropped me after the first cycle from 125 straight down to 75 mg. I still struggle with my neutrophils. I think I’ve had to hold three or four times. I’m grateful he dropped the dosage. That first month was crazy with fatigue and side effects.
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btw, I've hardly ever had full dose anything. My AC landed me in hospital twice and I needed dose reductions in that and in taxol in 2018 and 2020.
I've read through some of the stuff the right dose people and I agree, we're mostly always guessing. And I'm especially wary of meds that were trialled in men, as men and women have quite different med absorption and clearance.
I was just hypothesizing anyway..
Hey I dropped out of the trial. Not only did I not get into the sabr arm but the dose of radiation allowed by the trial protocol was 75% of what the RO had recommended. As I want to be super aggressive, I cheerfully said good bye to the trial. Had my CT mapping today. Two new tattoos. Realized I've not been doing my ROM exercises and my slnb shoulder really hurt by the end.
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I always think "start low, go slow". With my BP meds, start at low dose, and slowly increase based on BP readings. I started Ibrance at 125mg but did not know ANYTHING back then. Dropped to 75mg early on due to low ANC and my MO at the time suggested that. I have not had progression/change in treatment yet, so I do not know yet about doses of other MBC meds. But I agree with starting lower versus the highest dose with the most side effects. I am a small person at 5'1" so I don't think we should use the same dose that we would use on a large person.
I am tired of Covid isolation. I mean it. I was talking to a friend on the phone tonight. I want to be able to go get a soda and go places with that person. I miss church services. I am feeling like saying "what the heck" and going out into the world. I won't though. The risk is too much. But I am seriously getting tired of living in my house alone and bored. I want to do stuff again. I want to live again, for the time I have left. I am seriously hanging on for Spring. Less colds/ flus and hopefully a Covid vaccine. I cannot keep isolating. I have been stuck in my house since March. I love my house, but I need to get out. I need to do. I need to see people. I am scared to chance it, but I am tired of isolating.
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Moth- Good for you that you are going to get more radiation than was offered if you went with the trial.
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Candy - I know what you mean about time flying by. Somehow this year has both flown and dragged?! I was sorting out my vacation time for December and I will be off in 2.5 weeks and yet December 15th still seems far away. Or I was thinking earlier in the week that the grocery store now of course has a tree up, and poinsettias, but just yesterday it feels like I was walking there in shorts and they had summer toys out. However, I've tried thinking that for the year (well, 6 months, lets face it, I wasn't in any shape until June) I lost in being able to be out and about with cancer, the speed of change Covid has driven for workplaces to accept 100% remote work or more WFH than before will hopefully allow me to keep working a lot longer into the future.
Mel - I cannot believe youve done 4+ years at 125. That is incredible and something to aspire to!
Moth - I like to think things happen for a reason, even if its a gut punch at the time (not cancer though, obviously, thats just cellular bs). Maybe this will work out better in some way than the trial would have. Or have other benefit that can't be known just now. I hope the radiation goes well for you and zombiemet is finally put down for good!
Karen - what Tier are you in up there? Im worried that London's Tier 2 will shift to Tier 3 by mid month and cancel plans everyone has made to meet up (outside of course) for a drink or lunch. I can't imagine Boris will deny his buddies a chance for holiday cheer in the Mayfair salons, however, so full steam ahead!
About dosing - I do wonder if they dropped me too quick from 125 to 100 after only my first month. I was only complaining about feeling cold and cold flashes, nothing else. I am also 5'9 and pretty sturdily built, so I worry that the 100, while comfortable, won't get me the same bang for the buck. It IS working, though, so I guess that is what matters.
Black Friday sales were pretty good over here so I splurged and finally got grown up dinnerware and serving dishes, as all of our prior set of plates have more or less chipped or broke over the years (they weren't very good to begin with!). I won't unpack these until we move again next Spring, but I figured now was the time to buy something nice. And I got some new sheets with a winter pattern to make the bedroom cosy.
Cold and grey here, so today I think I will make a chocolate chip banana snack cake, wrap up/pack these presents that need to be shipped to Sweden and the US, and maybe pop down to the corner with a light beverage later to see our friends as they are headed home to South Africa on the 11th for the holidays. Lucky bastards.
Have a good weekend everyone!
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