De Novo Stage IV
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Thank you, Elderberry. I am definitely going to start very slow. I like the chocolate bar idea with little squares.
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Fun fact: Should you ever imbibe too much of a THC containing product and you feel uncomfortably high, take some pure CBD and it will counteract the effect or simply go to sleep.
Most edibles are clearly marked regarding the amount of THC per serving. For instance, one square on a 100 mg chocolate bar scored into 20 pieces would be 5 mg per square. It is much harder to calculate how much THC or CBD you're getting when you smoke, vape or dab but these methods provide rapid onset of effects as opposed to edibles which can take a while as elderberry noted. Oils and tinctures can be held under the tongue for 30-60 seconds and absorbed sublingually which provides a faster onset.
I have a great tolerance at this point so I tend to buy more balanced products such as a 2:1 or a 1:1 but most folks who are using cannabis for medical purposes can and do start low and go slow.
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Thank you so much. I am learning a lot and don't feel as intimidated as I did at the start of this process.
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Hello All, Chiming in, in case you may be interested in participating.
TODAY at 2:00 PM ET (US and Canada): Zoom Virtual Meet-up for those with a diagnosis of metastatic breast cancer
Register in advance for this meeting:
https://us02web.zoom.us/meeting/register/tZMud-mppjguE9cVL5jJvM8j5-fR5kByW3Ui
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Thank you. I saw this last week and have signed up.
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Hi KBL - I am also interested in exploring medical marijuana but I don’t want to smoke it. I remember reading in the Ibrance thread that your body uses the same enzymatic pathway to breakdown CBD and Ibrance so you could end up with more of one of these in your system due to body’s inability to break down both in sufficient time. I’m no expert, but I’d definitely suggest asking the pharmacist where you get your Ibrance if they have concerns, as well as MO.This is similar to why we can’t have grapefruit or grapefruit juice.
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I did see that somewhere. I asked my MO yesterday. What we have decided to do is let me try it and keep an eye on the bloodwork. My bloodwork is usually pretty telling. I see a lot of people do use it who are on Ibrance. I will not be smoking for sure. I’ll post on here how it’s going, but it may be a little while. Where I live it takes a few weeks to get the card.
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Sounds good, and please do keep us posted (if possible,here and on Ibrance thread)!
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I definitely will.
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I have received my medical marijuana approval. Now I just need to go to a dispensary. I want my daughter to go with me for support. I may have to wait a bit as she’s very busy. I’m really not in a huge rush. Lol. My sister gave me Tylenol Arthritis. I took it yesterday. I slept from 9:30-4:30 this morning and then fell back to sleep until 7. Is it pain keeping me up at night? Who knows. I’ll come back after I try the MM and say what my experience is. I feel like such a newbie. I’m nervous and want to make sure I get the right thing. I know it will be trial and error.
I will double post in Ibrance thread.
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KBL - I'm so glad you got a good night's rest. Pain will definitely keep you up, sometimes without realizing that's what it is.
I'm no help with the MM, but I'm interested to see how it goes for you. And, since you mentioned OTC pain relief... my husband recently tried the Advil Dual Action for the pain in his knees (really close to needing a knee replacement) and said it worked much better than ibuprofen or acetaminophen alone, and better than naproxen, even at higher doses.
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KBL, I hope MM will help reduce your pain and sleep well at nights. It is not fair to be in pain for such a long time. I am glad your daughter will go with you. Have you heard back from trial yet? (((Hugs)))
I guess couple of my thoracic tumors have waken up pain started steadily. Being in low energy mode most of the time and With this new T pain and lower back pain I think a closer look is needed, I am not looking forward to another fracture at all. So I requested to see the MO sooner, original appointment was scheduled for mid July 4/5 months since last appointment.
A question for all, how often do you see your MO/ do scans? I had a cat scan back in January but I haven't got any scan appointment yet, it is scary, what if they forgot.
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Snow-drop,
I am scanned every 4 months and then see my MO about a week after the scans. My MO orders the scans but it is up to me to set up my appointments. Sounds like you have a different system? Sorry to hear about your new pain and am glad you were able to move up your appointment. Can you call to request a scan prior to the appointment?
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Snow-drop, thank you. I feel for you as well with your pain. Hugs back to you.
I was having scans every three months. I think this time we will go four months.
As a matter of fact, I finally heard from the trial radiologist today. They are still very interested, so now I should get a call from a coordinator,who will ask for my medical records. I’ll keep you posted. I had written an email today asking if there was any news, but I decided not to send it until tomorrow because it would be two weeks since I had heard from them. Then about two hours later I got an email from them. I was so glad I didn’t send the email. It made it look like I was being patient. LOL
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Chicagoan and KBL thanks for your response. I'd like to set up a plan like yours with my current MO, scans in certain time and visit afterwards. I sent her nurse a call back message, hopefully she'll get back to me next week then I open the scans subject. with this unorganized situation I have not got a chance to discuss results of scans with my current MO, so far I had a scan that she ordered while seeing me in our meeting and next visit was 2 months later! Obviously the scans topic wasn’t as fresh as it should be, and I had more important concerns to discuss...
KBL, I am so happy for you that you qualified for the trial. and I must say you are patient:) I would have made several calls/ dozens of emails;)) I am optimistic about the new fes pet scan for you.
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Thank you, Snow-drop. I was very tempted to write last week but just knew he said he was trying, so I wanted to give him some space. Now I wait some more until someone finally calls me. Lol
Had a thyroid ultrasound today. There is a very tiny nodule on the left side that wasn’t there in 2014, my last scan. The report said nonsuspicious. Maybe that’s why my thyroid will not regulate, but I don’t know. Stinkin thyroid.
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Hi KBL, one more time I am glad that you could get through the trial and got good results. I admire you! and wanted to keep our little group active!
Found some trials offer different imaging techniques, might be of interest:
Candy, see the latter trial in Kettering “F-18 16 alpha-fluoroestradiol PET / CT imaging may help monitor changes in estrogen receptors in tumors during treatment.“
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Thank you so much, Snow-drop. And thank you for the great list. I had asked about the FORESEE trial, and the doc wrote me back and said it was for people where they have exhausted their endocrine therapy options. He said he thinks I’m a long time from that. He made me feel better.
I have to say that my clinical trial experience was a very good one.
The only thing I think about is my cancer is still everywhere it was when I first started on this journey. I guess the medications are working on it not getting worse, but it’s never gotten rid of what I already have to make me NED. That is definitely why my tumor markers are still so high. There is a lot of burden in my body. Tumor markers are going to be what tells me if things are getting worse. For the last six months they’ve stayed pretty steady in the hundreds.
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Snow-drop--- Thanks for the link. I cannot go to MSK, but they are doing the 2nd one listed (the 21 locations) at my cancer center. I am going to ask about that one. May not qualify for that study. But I wish I could have the FES PET somehow.
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Several months ago, my MO was looking into Cerianna, ER+ PET scan agent which was approved by the FDA. Unfortunately the imaging department hasn't been able or there isn't enough pressure to move on it to have at the facility. So I may also have to look at clinical trials in the future unless this becomes more available off trial at imaging facilities.
Totally off subject, has anyone decided to go off their medication when going a way for a few days? SInce Covid I'm going to the beach for a long weekend.. I didn't realize it's just not the medication, the supplements, then pills for possible constipation, then something to sleep. Then I have to pack the lysol, handwipes, masks, etc. All of this for 4 days... It's days like today when I long for my old self and didn't think about this crap. Well just felt like the need to rant. Hope everyone is doing well on treatment...
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Hi, all. Just bumping this thread for any new people who have been diagnosed de novo who want to share.
Going for my six-month lumbar and pelvic MRI on the 16th to see if I’m still stable with my bone mets.
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Hi KBL, thanks for bumping this thread. Good wishes for your upcoming MRI.
I have been keeping up with the updates but haven't posted yet. I'm de novo with 1 bone met. I just started zolodex and falsodex injections and should start Kisqali soon. I just got diagnosed a month ago so I'm still reeling but starting to get my feet under me. I know that I'm lucky to only have 1 met (with no pain) but it's still devastating. The ladies on these threads are incredible and so helpful. I feel fine right now (bracing myself for menopause) but worried about the sx of Kisqali. I'm 50, work full time and have 2 older kids. I'm trying to figure out to get ready for the fatigue, nausea and hair thinning. All of it feels very overwhelming right now because this is my first experience. Thanks for any advice and I look forward to supporting each other! Add me to the team. :-) xo
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NC - your stats are very similar to exbrngirl's with Grade 1 and one met. Has anyone mentioned radiating that met, despite no pain? Or are they going to see what Kisqali does for it?
I know its a crappy shock,but you are sitting in about as good a spot as can be for this dx. Try not to fear the menopause and you will settle in soon enough to the point where you continue on with life, you just have a few extra pills to take and some workarounds developed to deal with side effects. Keep us posted on how things develop!
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NCYogi, I’m sorry you’ve had to join this team but so glad you found us. One met or many, it is just a sucky disease that no one deserves, and It’s so fresh for you. I wish you great success on your combination. I worked for a year after being diagnosed. The first few months were a little rough with the fatigue. Just be kind to yourself.
If you don’t know about it, there is a Zoom meetup every Monday at 2:00 Eastern for us MBC ladies. No men have come as of yet. We just gather to chat or ask questions or try to help with questions that others have.
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sondra,
Thanks for noting that. I am as very happy with the approach my mo and to took. However,that was 10 years ago prior to approval of drugs such as Kisqali, Ibrance or Verzenio. I don’t know if mo’s have changed their tax for a single bone met. But asking about rads couldn’t hurt.
Yogi, do ask about rads. My mo felt that “killing “ the met would be effective and it clearly has contributed to my longevity IMO. On another note, I finally conceded to the fact that I need to use props for my yoga practice and bought blocks and a strap. So far so good!
Take care all!
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Thanks for the responses! Yes, we have discussed radiation and I actually had an MRI yesterday so the RO can see the details of how to get to it. Apparently it's very small and in a tricky spot. Do you guys know if I can get rad while on Kisqali? Also, any tips for battling fatigue? I've heard walking to shake the fog and (obviously) naps! My work life slowed down dramatically with covid and 1 of my kids is out of the house (college) so I'm in a better spot to slow down as needed. I just haven't wrapped my mind around that yet.
There is no shame in props Caryn! I use them all the time and it deepens my practice. (yes, groovy talk from someone who has been at it for awhile!) Thanks to all. It's helpful to talk about this.
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KBL, thanks for bumping the thread. In your pocket for your scans next week. I'm going to try to make it to that Zoom call Monday. I finally registered last week, but then got called away.
NCYogi - Welcome to the group no one wants to join. I'm so sorry about your diagnosis, and it is a whirlwind in the beginning. As you learn more about your situation and you get your treatment started, it will settle a bit. I don't know about Kisqali, but the Verzenio knocked me on my butt for several months. I retired on disability 3 mos after my diagnosis - my job was extremely stressful and no longer rewarding - but there are many who enjoy continuing work. It just varies with each person's situation.
There also a thread on BCO for people with bone mets, if you haven't seen it already.
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Thank you, NCYogi and SeeQ for the well wishes for my scan. I forgot to thank you for that, NCYogi.
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KBL, best of luck for healing bones or stable.
NCYogi, have you done any genetic testing yet? regarding your question, hormonal therapy is fine with radiation treatment but targeted therapy will start 3-6 weeks after the last season of radiation treatment. Since you have a small bone met (oligometastatic) you can ask for curative intent treatment.
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KBL, best wishes for MRI and results!
NCYogi, sorry to hear about your diagnosis, you have found a good place. This thread was my first stop when I was diagnosed in March and has been so wonderfully of good information and kind sympathy. I would second the suggestion not to do radiation and targeted therapy simultaneously. I was started on Ibrance days after I finished 10 days of radiation and I think that contributed to my difficulties with low white blood counts, resulting in a stop-and-go start to my treatment and repeated dose reductions. These are not uncommon, I realize, but I wonder if I might have done better with more time in between. Best wishes for your treatments!
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