My Husband, My Life, My Love, My Family, My Cancer

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.

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.

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!

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.

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.

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!

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.

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.

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,

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.

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.

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.

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!

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.

Moth- Good for you that you are going to get more radiation than was offered if you went with the trial.