Bone Mets Thread
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LindaE54:I participated in a vaccine trial at john Hopkins in Baltimore. It was an immunetherepy trial where they used my own tcells from my immune system and paired them with a breast cancer cell and trained them in the lab to seek these cells out in my body and destroy them. It was a four phase trial over 6 months and I received a small dose of chemo paired with the vaccine(a series of 12 very painful injections) and obviously the hope was to be tumor fee at the end but considering 1/2 the participants were unable to complete the trial because of progression I am very happy with the results.
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Congrats on stable, Party! And good on you for participating in the trial, even if the results weren't perfect. Stable is a very good thing.
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Terre, I first need to thank you for that story, I laughed so hard I was crying. Omg my daughter was like mom what is so funny, I couldn't catch a breath to tell her, I was picturing poop covered in cat hair and what your dh said 😁. Between you and Dunesleeper the comic relief is awesome. Thank you for your advice on how to deal with my onc. And I am going to make it all about me.
Linda, that's a great idea on how to be manipulative, I actually think I may say that to him, he does have a big ego and that may hit him where it hurts.
Partyoffive, so glad you're doing so well and have remained stable. That sounds like an interesting trial. Did the other participants progress because of the treatment?
Hugs to all, Annie
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Glad I made you laugh Annie. DH also suggested that I sprinkle it with glitter prior to submittal. He is a helpful chap.
It was really quite funny. Gross, but funny. Have friends coming up to visit; hopefully the sky will stay clear and we can get in some star gazing with the big telescope.
Hugs to all,
Terre
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Annieoakley: in answer to your question about the trial participants had to be stable to participate and were allowed to continue hormonal treatments along with the vaccine. We were scanned every two months and if there was any progression of disease you were unable to complete the study. The drs are unable to determine who will have an immune system reaction and whose immune system will seek these errant cancer cells out and destroy them because the women had progression then the drs saw that as an indication the vaccine was not working and other treatments were necessary. Hope I answered your question.
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I'm back from the "big city" seeing the Tragically Hip in concert, this was on my bucket list. I must be getting old because while I enjoyed the concert it seemed really just too loud. And I'm pretty sure that I wouldn't have passed a road side drug test by just breathing the air in there (luckily we walked)
Just checking in and I'm going to go back & read all the posts! But as I scanned I saw something about sprinkling something with glitter & I had to go back & read that post.... O.M.G!! too funny KCM!
Hope everyone is doing ok. Have a good weekend. Cheers, Dee
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Replying to the posts about changing oncologists. My first onc was the head of the practice.I did not get along with his medical assistant a young woman but very cold and uncaring,. The last straw with her was when she refused to contact the doctor when i asked for something to deal with the pain I was having, She did call me later that day to tell me that I could come back and pick up a prescription (office is only 2 miles from me) but by then I was so miserable I couldn't go back fortunately someone else picked it up and filled it for me. So I changed to a wonderful doctor in the same practice, unfortunately she was out of network so I had to change to an in network one. Been with this one for over a year and I am happy with her.
Re: the poop story I really needed the laugh thanks for posting it.
Charlotte
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So yesterday I finally got to meet a very special, long-time BCO & FB (we started a survivor group there) friend! Absolutely wonderful visit with Kari Campbell Finnigan.
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Kiwicatmom,
Great poop story! I was eating lunch in the staff room and laughed so hard I thought food would come out my nose.
I too changed mo's, shortly after my stage IV dx (which was shortly after my stage II dx, so it had not been a long term relationship). He was head of the oncology dept. and brilliant but lacked the warmth and personal touch which I need. He was also a bit dismissive when I asked questions. That was the ultimate no go for me. My RO, who I loved, set me up with my current mo and even made the first appointment for me. It's been a great fit and hurting the first mo's feelings was never a thought. It was purely business.
Caryn
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Partyoffive, what I don't understand and have always wondered about... When someone drops out of a study due to progression, is that always figured into the results? Obviously, they can't let you continue in a study if you aren't getting good results, but do those women even count in the final results? That's something that's always bothered me -- that it seems like people are disqualified and maybe never counted as fails -- only those who do good and better and the difference between those reported.
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Kiwicatmom- I lurk and read here sometimes. rarely post. I have to say reading your stool sample story just cracked me up - your DH has a great sense of humor.
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dlb. Love the pic. Thanks for posting. What's her bco name ?
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Great pic, DLB - looks like you two had fun!
Glad I could make you laugh, Caryn, Rose and Charlotte. It was pretty funny all in all. I hesitated about sharing it, but figured it wouldn't be too offensive and it came with a warning. DH does keep me laughing most of the time. He's got a very dry sense of humour and dry delivery.
Had some friends come up from Wellington and stay over in hopes of stargazing. Which meant it clouded over as soon as it was dark. Still had a nice time though. Challenge to cook for them. She's gluten, sugar, and dairy free. And doesn't like anything tomato-based or anything with mushrooms in it. So I made tacos. A bit lame, but oh well. Best i could do on short notice.
Hope everyone is having a good weekend!
Hugs to all,
Terre
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Dear Caryn, Arimidex has lost its magic....I have to have a PET next week after a rise in markers- have been on Arimidex just a short 13 months....How has your time with femora been? I will be switched to Femara and Aromasin I think after the scan...I am very nervous because I was so delighted with Arimidex...Alas it was no longer working..Have you had a PET? take care Carolyn in Music City
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Hi Carolyn,
Maybe, just maybe the tumor markers are not accurate. Of course, the PET will tell, but tumor markers have been known to be inaccurate ( my mo does not do tumor markers). I have been on Femara since June and though I have some joint stiffness, it's usually relieved by moving around. Perhaps this is the universe's way of telling me to get off my bum! I do take Aleve before bed so I'm not so stiff when I wake up. As for PET's, yes, I had one in Octtober and all was well. My next one will be in April so I will put it out of my mind until then (a little denial goes a long way). Will be thinking of you.
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Hi everyone, I feel like I know many of you from other threads but I just wanted to pop in and say "Hi" since I lurk on this on so much!
Party of Five, congratulations on stable! That's terrific! And for what it's worth, I had stable scans for the 1st 2 scans post Faslodex and then started to show a little regression on my more recent 2--I think sometimes it just takes a little time to get some regression, so you may get that eventually, who knows? Although if not, stable is awesome, too!
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RosesT - glad you decided to join this thread. Welcome!Linda
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rosestoeses: thank you for the positive comment my onc told me the same thing and said that bone mets are the hardest to see regression in because the scans are so subjective. I also produce no tumor markers so he doesn't have that at his disposal either. Hope everyone is having a good Sunday
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Deanna, Beautiful photo.
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Good Day Ladies:...Well Thank goodness for the warm and sunny weather in Idaho!! I finally feel good after 4 days of weakness/nausea/vomiting/exhaustion ....from my chemo treatment last Tuesday (Red Demon) A ....You know weather plays a big factor for me with my mood and mind set...and having my body feeling well of course.....
I am getting excited about next Sunday when my best GF comes for a visit from Oregon...I've know her for oh I say 20 yrs...and she is taking vacation just to come and visit me...I am so happy!!
I hope everyone has a good week...with positive results from scans/tm/etc....
I love you all Carla
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love it Carla. Enjoy!
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Carla -- So great that you're feeling better after a rough week! Sunshine always helps, doesn't it? Have a great time with your friend visiting. You deserve a little fun and distraction.
No long chats for me today. At 2:30 CT, Rebecca and are saying "I do" at the County Courthouse. Some friends are attending and we'll go out and celebrate afterwards. Big day at our house!
Hope you all have a good one!
Sharon
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Congrats to you, Sharon
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Carla - enjoy your visit!Sharon - Big day indeed!
Romansma - How did your visit with Onc go?
Linda
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Congrats, Sharon and Rebecca!
Carla - glad things are better and you're getting company.
Hugs to all,
Terre
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Hi All!
Congratulations to Sharon & Rebecca!! Carla, hope you have a great time with your friend, nothing like a friend visiting to raise your spirits!
I'm traveling tomorrow to see my onco on Wednesday and I'm terrified that she's not going to have good news for me. So please everyone, fingers crossed. Friends of ours from Vancouver are meeting us in Victoria for a couple of days so we should have some fun whatever the outcome of my appt, I'm bound & determined not to let it spoil our mini holiday.
Hope everyone else is well. I'll pop back in to let you know what she says, good or bad. Cheers, Dee
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Dee - keeping fingers crossed! and enjoy your mini holiday.You may have mentioned it but I don't remember - did you have scans or other tests for which you will have results Wednesday?
Linda
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Linda, I don't think I mentioned it, I had yet another CT scan, I only had one 7 weeks ago, getting so sick of them (not to mention all the radiation from them) and I had a whole mess of blood work done last Thursday. They took 6 vials, on the blood work sheet it seemed like I was getting every test known to breast cancer. So I should be getting all these results on Wednesday.
Plus she wanted to get another look at my last bone scan. She had only come back to work 2 days earlier & it was the week before Christmas so I don't know that everyone was doing their best work. Cheers, Dee
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Good luck with the appointment, Dee. Fingers crossed and good energy coming your way!
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Sharon, congratulations to you and Rebecca on your big day! I hope you took alot of pictures.
Carla, so nice your friend is there to visit with you, I hope you enjoyed the sunshine and the company.
Dee, thinking positive thoughts for you on Wednesday. Enjoy your mini holiday.
Linda, how is the weather there and are you getting out for your walks? It just will not stop snowing here!
Hugs to all, Annie
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