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

Mel, I can sympathize with you. Once your mind grabs a hold of the what if’s it’s so hard not to dwell on them constantly. And then they affect everything. I hope you get the results soon and that all is well. How often do you see your MO? I wish he/she would listen more to your QOL issues

Hello everyone, back from the weekend & trying to catch up.

Oh no Laurie booboo, I'm sad for you and it must be all so difficult on all of you. I'm glad you have sisters to help you and I hope that eveyrthing does unfold amiably and this is one of those life & relationship passages that doesn't drain too much from any of you & you come out the other side peacefully.

Mel - I read recently about someone going through mBC treatment who ended up also having Addisons..And that made me think of you because addison's also causes thirst.....lots of thirst & I know you said you drink so much water.... and it causes fatigue. Endocrinology was my least favourite subject so I can't offer more than that but that combination of symptoms is worth exploring. I believe it's diagnosed through bloodwork, often early morning fasting & I've heard it can take a couple blood tests to get confirmation. Might be worth pursuing if only to rule it out. Treatment is easy - steroids afaik. So maybe float that by your MO and get screened? Just tossing it out there..... because that would be an easy fix & improve QOL. Hope your scan results come quick.

I scanned yesterday morning - just a quick chest CT to see what's happening with my pneumonitis. My MO just called to say there's still pneumonitis but in a small area, all targetted by the radiation...it's just gunky & they can't tell what is happening there. She's postponing my immunotherapy by 2 more weeks but I'll keep on my chemo regimen. Otherwise I'm feeling good - I'm still on pretty high dose steroids, started the taper & now she's approved doing a faster taper. I'm getting all the energy and good vibes and less jitters so that's nice. I'm probably going to hit the steroid crash wall at some poing which might not be fun lol. We played board games this weekend and just had lots of little fun moments. All the bulbs we planted are starting to come up and we've forgotten what we planted where so it's all going to be surprising but there are lots of poky green stems so that's making me happy.

Radiation today & tomorrow for the bone met & then that's officially finished & if all goes well, the end of the bone met saga.

Happy International Women's Day. 50% everywhere, everything, female power everywhere.... Women's health, women's safety, women's priorities, women's rights.... until we're eveywhere, the fight continues. If anyone is looking for a rousing Women's Day read, Caroline Criado Perez's book "Invisible Women: exposing data bias in a world designed for men" is excellent. Many medications aren't tested on women at all, dosages aren't tested on women, our symptoms are ignored, seatbelts, car safety, iphone design, etc etc etc...

hugs amigas

Nice one Moth!

Yes Mel footwear always is a thing ... hand and foot syndrome SE from the Capecitabine/ Xeloda.... and the diaorreah, ongoing nausea plus the itchy rash across face and chest....

I get more neuropathy symptoms on less active days of exercise and it is always worst the first couple of days after Herceptin. I have never been a pump wearer on a regular basis but I can certainly feel it in my body.

Lazy day for me after the all day blanket washing yesterday. That took a lot out of me. Little bit of laundry, some mug bread and also tried my hand at a simple pizza. Not overly impressed. Will stick with english muffins for toast. Quick 20 min walk this morning.

Hope everyone is having a good day today. It's sunny and supposed to reach 70 here today -- woo hoo! Gotta love when spring rolls around.

I had an appointment with my primary care doc today -- regularly scheduled. I posted on bone mets thread about my back (think I also posted something on here) but she thinks it is a recurrence of my previous back issues, and is happy that I'm starting PT today. She also prescribed a long acting NSAID to relieve pain and a muscle relaxant because she says my lower back muscles are really tight. I'm guessing I'll hear the same at the PT place this afternoon. But just to have someone sort of confirm what I had suspected was actually very uplifting. And to not have someone suspect it's just another "cancer issue" was also helpful. Just some short term light at the end of the tunnel.

Mel, I second what Tanya says -- they have done studies on the efficacy of 100 mg Ibrance versus 125 mg, and as she said, supposedly it works just as well. I wasn't on 100 very long (because I switched treatments) but I did feel much better on the lower dosage. Did help a lot with sleeping, and also nausea (did not help with constipation, though, for me). So it's worth it to raise with him and at least discuss.

congrats Mel! Five years!!!

Study Result

Impression

No new metastatic lesion seen.
Unchanged metastatic bone lesions.
No other interval change from prior study.

thank goodness

Mel- so you have not seen MO yet, just report? When do you see MO?

Mel, that’s awesome that all is stable after a year! I hope you can do something to celebrate, a little or a lot.

Mara, sorry to hear of your bad reaction to your mug bread, assuming that was the culprit. I’m sure it was shocking and miserable.

Candy, I hope the food pantry comes through with something you can do there. It sounded like a good step back into volunteering. I know quite a few people who are still not ready to do any indoor gathering or eating. My 30ish year old son and his girlfriend are two of them. Today is his birthday and we have a couple nice weather days here so we’re meeting in a park tomorrow (his choice) with picnic tables and bringing lawn chairs to spread out more. I’m bringing a cake. Haven’t seen them since November so looking forward to that. I hope a lunch or two outside with a friend works out for you. Maybe they’re used to gathering but will be understanding that you’re not. Too bad we can’t all bring our lawn chairs to Mel’s and sit in a big circle in her backyard. 😊

Hi Everyone! I hope this day is bringing some sun and good feelings to you

Oh Mara so sorry that you got sick. Is your tummy sensitive to new foods? Maybe introduce new things slowly. I hate that you can only eat a few things all the time.

Rosie- Enjoy your son's birthday celebration. Yeah, my friends are the go go go types and I guess a lunch in the park sounds pretty lame to them. They are not letting Covid concerns slow them down so they do not understand why I am so hesitant to do stuff.

Mel's back yard sounds as good as Mel's Living Room. Wish it was a real place we could go to.

Mel, when it comes to lowering the dose, you are the driver of that car for sure. If you are hearing from people here that they have lowered it and had a better result for energy, sleep and that, it may be worth looking into for your qol.

I think sometimes the MO is more results focused on our drugs BUT they can sometimes lose focus on how we have to live our lives while on these drugs. I am very stubborn about different things they have suggested I take for depressive moods, very slight iron etc. Both of those things include gastro side effects, depression meds plus my tegretol equal life in bed. No thanks. I rather like looking after myself outside of cancer and doing what feels best. I did finish my second walk just now. Was easier than the first one. I am going to try for a 3rd walk after supper. The sidewalks are clear and dry and really liking wearing just the sneakers outside. The endorphins are helpful to my mindset as well.

Tanya, thank you, I do feel better now, just a bit tired. I managed to walk 10000 steps in 3 separate walks today. Two in the sunshine and one in the dark which was kind of nice, fewer people on the sidewalk to avoid. I am glad you got to get in the garden.

Mel, so happy to hear your results. I agree with the rest...you are in charge....your QOL is important.

Mara, what an inspiration you are to me. Here you are, sick and vomiting, but still you walk. Oh girl, you don’t know it, but seeing how you push to exercise is a push for me to do the same. God bless you.

Candy, I am so with you on needing an outlet. I am going to be eligible to get the shot this week (they are lowering the age to 60 here), so once I’ve got that behind me, it’s time to get moving. I am actually excited about starting something new and fun.

So hubby and I, after several long talks, are going to try again. I told him I would rather stay and fight for our marriage, and he said he was so glad. So we’ll see how things go. He is going to AA meetings every day, and told me he would try harder. Alcohol addiction is so ugly. For those who believe, may I please ask for your prayers for my husband to be able to resist the urge to drink. I would be so grateful. Thanks.

Lynne, you have been on my mind too. I am so inspired by how you are hanging on. I am probably where you are physically (my last PET scan showed major progression), although I am hoping to have more time if Abraxane works for me. I really believe the will to live is powerful. I will pray that you defy the odds and have many more years with your family. You are also an inspiration

Love to all.

Laurie, I am glad I can be a help to you. Had I had an actual illness that left me like that, I would not have been able to do it but it was food related so the zofran and some rest before eating again. Managed 10000 steps according to my phone. I was happy with that. Glad I can be of some help like I say. I am inspired by your strength with everything personal going on piled with dealing with your progression, your strength is an inspiration to me. Not sure I would be that strong with all thos factors. Glad you are somewhere with support.

It is sunny again today and going to be quite warm as well, planning post meal walks of around 1/2 hour each again. I will say, I did find that I had a little trouble falling asleep at first due to the night walk but imagine I will get used to it or eat supper a bit earlier. I also plan to stick to meals I like even if they are limited as they don't cause gastro issues. Basics of beans, spinach, queso and beefless ground. I never tire of it.

Goldens, good for you and your husband. Got to have some time just to enjoy with each other and the rest of your family. I am happy for you.

Candy, I am with you on wanting to volunteer but it will depend which shot I get. They are taking the ones that are shown the most effective for certain parts of the population and if I don't get one of the higher efficacy ones, I will continue to behave as I have done and not go many places. I know I will still be protected from serious illness and death as all drugs are effective for that, but some are less effective. I would not be surpised if some mixing and matching of drugs happens to stretch them as I have heard on our news reports here.