My Husband, My Life, My Love, My Family, My Cancer
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moth - that’s the thing, my platelets had been down to 15 as of August 30 and the red blood cells were low since that time too. It was only until this past Friday that my MO ordered the transfusion which I couldn’t even get until Saturday due to bed shortage. So you’re right, I’ve been very sedentary for a while. I need to push myself to do more.
They did not say when I’ll have my next CBC. I have a telehealth appointment with my MO set up for this Thursday to discuss the results of the bone marrow biopsy.
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Moth~ if you do all that. You’re my hero!
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Did you guys see or hear about this? I may see if I can get into their clinical
https://www.fiercebiotech.com/research/bayer-s-breast-cancer-drug-turns-up-a-tumor-protective-pathway-eradicates-tumors-mice0 -
Booboo - I read about it last week on one of the other threads on BCO. I don't know what the rules are to qualify for The Right to Try law in the United States but maybe you could get it through that law.
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thanks for sharing. I think you should be able to choose your treatment within reason. If there is a small percentage of a chance. To help. The patient should have that choice.
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I have officially gotten word that phillys cancer has indeed spread to her brain, her abdomen and her lungs. The doctor is giving wbr. And new chemo, Without treatment, she’s looking at a year. Let’s send her every vibe we can muster. This wonderful soul. Always happy. Always honest. Philly is strong. Philly is good. We are thinking of you friend.
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Micmel, thanks for the update, she hasn’t been back to BCO since that post an I was concerned. WBR (whole brain radiation) is the standard treatment for numerous or lepto mets and does provide some good results.
For Philly
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Sending sooo many good wishes to Philly!
I read the article about erSO and unfortunately it says "While the current study found the drug was well tolerated in mice and dogs, further safety analyses are needed before it can be tested in humans, the UIUC team said." I checked clinical trials dot gov, and did not see any human trials yet. These news stories about a great new drug that is far from being available yet are so disappointing.
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Someone from another website said she was told by a Bayer executive they have started testing ErSO in primates.
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Thanks for the Philly update, Mel - I too had checked her most recent lepto thread and saw she hadn't returned and I was concerned. She was the first person I reached out to after my dx,as ours (and age) are so similar, and she reassured me that while its a crappy situation, the drugs made it doable. It helped a lot those first really grim months, to see her living life to the full, despite mbc.
I hope she can pull through this situation and stabilise a bit at a new plateau and still enjoy the life she has left to live.
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I don't even want to type the word lepto. I mean. Well. We all know.
I did make my cinnamon buns yesterday! Cleaned up in the kitchen a bit and vacuumed and knitted and read a bit and updated my blog.... lots of little things and it felt like a nice full day. I might be hitting a sweet spot of the steroid taper - extra voom to do things and a bit more focus to actually start, middle and end. I'm on this dose for 2 more days so I better take advantage lol.
I wanted to do all my christmas shopping while on this steroid taper but have been drawing a blank. I'm all out of ideas. I have to spend some time scrolling through amazon and maybe past year's wish lists.
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So sorry to read about Philly. I hate this disease.
Well I feel like crud with this Lynparza. Today is day 5 on the new med. Nausea and no energy. I joined a closed FB page of others on the drug, mainly ovarian cancer patients. Most have posted that this is how you feel with it. And that the first month is the worst. One posted they had nausea for 2 months !!!! This is not QOL, in my opinion. I know I have to give my body a chance to adjust. And slowing the cancer is #1. But... I do not feel like doing anything. I know some of the "not do anything" feeling can also be grief with my sister's passing. The grief process. The stress of the last few weeks. But, I feel awful. Waves of nausea, no appetite, want to sleep all the time. I cannot get things done I need to do.
I bet the next thing to deal with is a thyroid biopsy--- thyroid lit up on the PET, history of benign nodules. I don't know if I can face that right now.
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Candy - so sorry about the nausea. I have a terrible time tolerating that feeling. Have you tried Sea Bands? They are stretchy bands that you wear on your wrist on the pressure point on the wrists that helps with nausea. It helped me with Ibrance (which I realize that Ibrance doesn't normally cause nausea so your new med is a different beast). I think you should be able to find them at your drug store.
Wishing you the best!
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Sending my best to Philly. It’s very scary how things turned for her in what seems like a short time. I hope the chemo and WBR do what they’re supposed to do. 💪💪
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Love to Philly and echoing everyone else with the hopes WBR helps her out. Lepto mets are definitely a scary dx.
Candy, can you get zofran (ondansetron)? It helps me to this day when I get scans done since I get nauseous with the injected contrast dye.
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Candy,
There are a lot of anti-nausea meds out there. I should know. I think I have a bottle of each on my dining room table because xeloda and I do not get along.
I found for me that Ativan has worked the best at tamping down the nausea. I take one in the morning and then most days one in the late afternoon. BTW, it also helps with stress, but I take it for nausea. I also sometimes use flat coke or ginger ale to help -- sipping it slowly.
You should let your MO know ASAP. At my center, they have a specific pharmacist to deal with patients who are having issues like nausea. The reason that I have so many drugs is that we sat on the phone for about an hour and a half one day and went through all of them and talked them over to figure out which might work for me. Zofran is very constipating, and therefore, I don't like it. So are some of the others. But some people like compazine. There are others out there, including a patch that you wear for a few days and then switch it out (didn't agree with me.) But they will surely have someone at your center who can help you with this. You should not have to suffer.
As for the thyroid, fingers crossed that it's fine. Think of the bright side. If it's not, the treatment is VERY quick and easy and nothing like what we go through with breast cancer.
Hope this info helps.
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I’m so sorry Philly is going through this. I am thinking of her.
Candy, I’m also sorry for you. You’ve had to endure so much all along, but these last few months with losing your sister and switching meds is just awful. Please know I’m thinking of you as well.
Hugs to all
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Mae and Mel you make me laugh….after 30 odd years of being very careful what I say (teacher) I am now embracing the world of swearing WTF 🤬 amazing how much better I feel!
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BevJen- I do have Zofran. Prescribed by my Palliative Care team. But I worry about using it as I have read/heard from many that even with 1 dose it caused SEVERE constipation. I deal with constipation already. So I have not touched the Zofran pills. And with Lynparza being twice daily dosing I could realistically use anti nausea meds multiple times a day. Is Compazine better concerning constipation? I have never used it. I have heard of the patch--- Scopolamine-- but heard of 1 person that got confusion with it.
This is not fun. Not QOL. To live with nausea or take something and have obstructed bowels or confusion.
I may message my Palliative Care team.
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Candy,
Compazine does nothing for me, so I don't mess with it. I tried the patch, but it was too strong for me. I had to take it off early. Others swear by them.I did not get dizzy -- I just felt very, very off and -- nauseous.
And zofran is way too constipating for me.
I forgot about your palliative team -- contacting them is a great idea! Make use of the resources that you have.
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I use reglan for nausea , seems to work for me. Everyone’s different
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Oh jeez, I haven't heard Prick, Twat or Crotch Gobblin in a while. That's funny! Mae that kind of lightning strike and then a flashing duck would freak me out. Sounds like something from Stranger Things! The weather here is weird. We've been gagging on smoke most of the summer but I think there must be a fire that got closer. The sky is an ominous orange grey and I am seeing occasional ash flakes. I don't have cable TV but I haven't gotten any alerts online so I guess I'll just keep an eye out. Tomorrow is the one year anniversary of the big fire here that wiped out most of the southwest part of the Rogue Valley. On top of the Covid surge this is all just starting to feel a little apocalyptic. But I'm not dramatic or anything, not me, heaven forbid!
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I am sorry to hear about Philly. She was one of the first posters I ran across on BCO and her posts were very encouraging to me. Mae - that duck is amazing! The lightning strike sounds a little scary though. That combination sounds like something out of Stranger Things! Here things are just getting weird. We've been choking on smoke for most of the summer but I noticed today the sky is just different. It's an ominous light orange/grey on top of the smoke. I don't have TV outside of streaming stuff and I haven't gotten any alerts online. Small pieces of ash are falling though so I think one of the fires might be closer or bigger, I'm not sure. With the Covid crisis here it just feels very apocalyptic, but that's probably being a bit dramatic. Who, me? LOL.
Candy - I can empathize with the nausea. I hope you can get some relief soon.
Karen- I'm with you. Typically very cautious about my language but I have sworn more than I like to admit the past few days. Wasn't it you that introduced us to the word eejit? Don't know if it's a swear word but I still think it's great.
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I’ve always told it like it was. I grew up a feisty young woman and am very territorial over things I care about. I get worked up sometimes instead of saying the word. I will say cuss word. Or bad word. But I am. Certainly not offended by it in anyway. So dont think anyone will offend me at all. Xgeva shot and bloodwork tomorrow . Gee such fun for us all! I’m trying to go to sleep but I hate the smells of the infusion center. Brings back too many memories. I’d rather forget. Sleep well. Ladies
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God bless Philly and everyone here. I don't post often. It's difficult to keep up and post besides. A very stressful year and yet cancer is under control. You all give me hope and thank you for being here when I need you.
Tooth ache. Do for Xgeva friday. Every 3 months for last 3 years. Maybe time to stop?
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I love Karen but I was busy using a term Mae gave me, crotch goblin. One of my friends posted on Facebook that some people in my city were throwing rocks at the prime minister, likely related to covid rules and some places that have mandatory vaccination etc. When commenting, I did call them a bunch of crotch goblins for their behaviour. Childish behaviour, if they want change, protest peacefully. Get more results like that than throwing rocks.
Not sure what I want to do today. My friend who I usually just talk to on the phone gave me a bunch of wigs and I got to meet her in person after 2 years of talking. I may try different options to straighten and restyle a few of them as they look quite strange. I am not picky because they were kindly given by a friend and will try to make them look good on me. The colour is coppery tones, unsure if it will look good on me, we will see.
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That sounds fun Mara! During chemo I resisted wigs. I just always assumed they would be hot and uncomfortable so I stuck to cotton jersey beanies for the most part. Now that I have some hair but am thin and frizzy on top I have considered a wig. I've always had curly hair and I wonder if it would be fun to try something different or if I would feel awkward. I'm so afraid they will fall off!
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Hello everyone. Thinking of you all and wishing you the best.
Fingers crossed for Philly.
Candy. I must be really weird, but I have had no constipation issues with Zofram. Just wanted you to know that there is at least one person without that issue.
For those of you who have had chemo, about how long does it take to see results? My airways are in some real trouble. Am now on full time oxygen as the mediastinal nodes are crushing my airways. Have had a few very scary moments where it felt so tight I almost could not breathe. Thank goodness for Albuterol which opens things up just enough. Cold cap arrived today, port goes in on Friday, chemo on Monday.
Cheers,
Moving
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My children are at the funeral for their great grandmother , who was 99 years old. She was the most amazing woman. I've ever known. She was my x husbands grandmother. I loved her dearly. She was of the best generation. Hard work, patriotic, honest. She will be so missed. I've never known someone that wonderful before. It's like a switch went off. Life is strange.
Got my bloodwork done. My calcium was low. First time ever. But my Tumor markers even lower than last time. Only change was calcium. Always something to wonder about.
Thinking of you all having a hard time. You're not alone.
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Emac877 - I know a lot of people have fun with wigs. Personally, I did not like them and only wore them 3 days, which were days when the company I work for was trying to sell a division and I had to meet with the prospective buyers. I found them hot and we have a lot of wind where I live so I was always worried that it would blow off. I mostly wore ball caps and it did blow off my head one day in the Walmart parking lot but I figured that the people could probably already tell I was bald underneath so I probably didn't frighten anyone too bad. They do make a thing to put under the wig that helps to hold it on your hair better. My hair came back after IV chemo and mine is curlier than it was prior to chemo and maybe just a little thinner and I probably will not grow it back to my original length since it is thinner. I had to learn to deal with my new texture of curls as they seem to behave differently than my less curly curls I had prior to IV chemo. Have you tried some different products and techniques to deal with your new hair? Are you familiar with the curly girl method? I don't follow it strictly but I do use some of the techniques.
Candy - Praying that you can get a good QOL back with your treatment and that you get a treatment that will work for you! my condolences on your sister.
So sorry to hear that Philly is having a rough time. Sending good vibes and prayers out to her.
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