Follow up on SBRT to Liver

[Arisgram]

Hi everyone. I just wanted to give everyone a quick update on the liver SBRT in case the info may help someone in the future.

In May, two lesions were discovered on my liver after progression on Xeloda. One lesion was 2.5 cm the other 3.7. They were located on opposites sides of the organ. I requested a consult on Y90 treatment, but it was determined SBRT was a better choice. I was told there would be essentially no side effects and the procedure was "needle free" (a big deal for someone as needle-phobic as I have become) and would take approximately 10 minutes.

10 days before the treatment, I stopped taking the Xeloda and a simulation was performed which required a CT with contrast and labs. So much for needle free....it took four attempts to start the IV and a conversation with some snide, young resident on an iPad. 10 days later, I was scheduled for my first of three treatments. I was positioned and strapped into place with my arms over my head. I was there for 2 hours and 39 minutes! When they finally released me, I had the worst headache I've ever experienced. I was told to wait in the lobby for the nurse. After 40 minutes, I told them to have her email me if she needed something. Magically, she appeared and asked me if I had some problem waiting. Seriously?

Anyway, she took my blood pressure and asked me three or four stupid little questions (Do you ever feel depressed?), and chastised me again for rushing her. She informed me after the next treatment I would have to have labs drawn. I informed her I would be going elsewhere for labs as they were unable to stick me. Needless to say, she didn't much care for me.

Before the second and third treatments, I took a klonopin and wore some ear protection as there is a loud vibration during the "treatment" portion, which does indeed take 10 minutes. I was mentally prepared for the 2 hours on the table and all went without a hitch. I drove across town to my oncologists office after #2 and had my blood drawn. My liver enzymes were slightly elevated, but all else normal. After the last treatment, I was told the doctor would call me in a month to check on me.

3 days out, I am pretty sleepy most of the time, but I have had no nausea or any significant discomfort. It can take up to 4 months for the scans to show results, and I will not be able to start systemic treatment until mid-week next week. I'm assuming it will be Verzenio.

Most enlightening through this process has been how well I have felt not being on any meds. I have been in a constant state of fear since diagnosis because of all the pain and fatigue, and it has been nice to be without those nasty side effects!

Sorry for the long post. Just wanted to be sure to give a thorough description in case someone else is facing the same procedure. Thanks to everyone for all the kind words of support. It's so nice to have folks who understand!! Much love, Andi

[SoCalLady]

what is sbrt?

[Arisgram in reply to SoCalLady]

Stereotactic Body Radiation Therapy. It is a very targeted form of radiation, accurate to within a millimetre I believe. It is usually administered in 1 to 3 doses.

[Hidden]

Hi AndiI cannot believe how we can be treated like we have all the time in the world to wait around for people. Makes me quite tetchy at times.

Sorry you had to go through all that for the treat,ents, but boy sounds like you are doing really well. I do hope you get a break and it worked. Sounding positive so far isn’t it?!

I have been thinking of you, so thanks for updating us. It’s great to know you are ok.

Clare

[Arisgram in reply to Hidden]

Thank you, Clare. I am a healthcare patient quality consultant, so I'm more vocal than the average patient...and like everyone else here, I've been doing the "patient thing" for a long time. I try to always be polite, but I am not going to do something I'm uncomfortable with anymore. I'm too tired.I am very hopeful this will work, and I appreciate more than I can say your care and concern!

Andi

[Iwasborntodothis]

As women we are all socialized to be polite and quiet. I have found that we need to be much more assertive in medical situations (and others as well) as being assertive doesn’t mean being rude or in polite. I am proud of you for standing up for yourself and want to thank for this information because I have tiny liver mets and I don’t know what’s next if Xeloda stops working. 🙏

[Arisgram in reply to Iwasborntodothis]

I sure hope you can stick with the Xeloda. If it weren't for the hand and foot issues, that drug is great! I was on a Facebook group and there were ladies who had been on it for years. I have my fingers crossed you will be one of them! If not, SBRT was not bad at all.

[Iwasborntodothis in reply to Arisgram]

Thank you - we are all pulling for you and grateful for you sharing your experience

[Arisgram]

Lol! Kindred spirits it seems!

I have just realized the lymph nodes at the back of my throat are swollen and one is a bit sore. Can you think of any reason SBRT would cause this?

[Arisgram]

Thank you! I'll do it!

[stardust1965]

Andi, I echo what others have said here about making the most of every minute and needing our hospital experience to be the best they can. If we don’t speak up who will? Thank you for sharing your treatment experience here. Keep us posted and I hope you get great results. 🤞Vicki xx

[Teddielottie]

Sorry that you have had to go through all this , but to hear you say you are feeling much better as a result of it , it has already been worth it...I wish you good results in a few months time and I hope your next treatment works well. Meanwhile , enjoy your beautiful garden...relaxation and hydration . Thanks for updating us .Take care ! x

[Justme153]

HI Andi thank you for the update. So sorry you had to deal with inadequate health care personnel! Glad you are feeling good and hope this continues for a long , long time!!! Debbie

[13plus]

Oh my goodness, I swear my arms would go numb lying like that for so long! I’d also lose my mind lol, they’ld probably have to knock me out! Rude medical staff are the worst, like we’re not going through enough already. Thanks for letting us know about the procedure , I don’t have a need for it but it’s good to understand these different treatments better. Wishing you a nice break till you restart your meds!

[hdhonda]

Andi,Do you go to or have you considered UAB? You were treated awful and that makes me angry. Cancer patients don't need additional stress. Best of luck. Blessings, Hannah

[Arisgram in reply to hdhonda]

Hey Hannah, It was UAB. I had my first round of care there 10 years ago and other than my medical oncologist and two chemo nurses, they were HORRIBLE! I only do radiation there now. BTW, my partner is head of quality and safety for the medical center! Boy, does he get an ear-full! Thank you for your concern. I have to remember these folks are busy and given what they do, my situation is not any worse than anyone else. Andi

[hdhonda in reply to Arisgram]

Wow!!! That is surprising. The big ones are usually so kind and helpful. UAB has gone more towards heart issues in recent years. They need lessons on scheduling patients.

[hdhonda in reply to hdhonda]

I sent it to quickly. Our time is valuable too plus we feel bad sometimes. Blessings, Hannah

[love2golfwell]

I'm so sorry that the health care people taking care of you treated you so badly. I would think that people in health care dealing with MBC patients would show more compassion and kindness. I am also sorry that you were there so long during the first treatment and that your simulation required an IV contrast and that it took 4 sticks to get the IV in. I have had 2 sessions of SBRT (5 treatments each) and did not have that experience at all. There was no IV contrast during the simulation and each treatment took about 20 to 30 minutes top, including set up time. My lesions were not in my liver, they were on bones so I don't know if that makes a difference. I also do not like needles and have small veins so I often need 2 sticks for blood draws or IV's unless the person really knows what they are doing. I'm glad the treatments are done and that you don't have any residual side effects. I also did well when I had mine. I'm also glad you have a bit of a break from meds to have some additional time to feel stronger. Never worry about the length of posts. Fighting this disease requires the support of a village. Thank you for sharing your story. Hope you get good news when you have your next scans. I guess it can take at least 3 or 4 months for the inflammation from radiation to dissipate so that scans will be more accurate. Sending you some hugs and prayers.

[Arisgram in reply to love2golfwell]

Thank you so much. I'm glad the SBRT to your bones went well. I had two lesions on my spine treated a year ago. It was successful as well. I don't know if it was easier or I'm just more grumpy these days. Likely the latter. Be well, my friend and DON'T LET THE NEWBIES STICK YOU! ☺Andi

[love2golfwell in reply to Arisgram]

Thank you, Andi. I think we just get tired of being poked and prodded. I just had a PET scan Monday and was told no new evidence of disease, which was great news as I had 5 SBRT treatments the end of March and was hoping they worked. The person doing my bloodwork was going to use a vein in my arm but checked with another nurse to find out if it was okay to use and she told him it was not a vein! Did not give me a lot of comfort. He did find a vein in my hand to use. The tech who was doing the PET scan had to try two different veins to get the IV in. It was not a very pleasant experience. I warned both of them ahead of time that I am a hard stick.

[Lna21]

Hello AndiThank you for the update

I am glad you got the SBRT and hopefully you will feel better soon.

Sorry about the Health worker not being nice or professional. I reached that point where when I am bothered by health workers not being good/kind I speak up. Tired of being poked twice because I got the newbie … my mother was a nurse, she is such a compassionate and sweet human being. I wish I would always have nurses like her… anyway I wish you a prompt recovery

Helen

[jersey-jazz]

Dear Andi-----Thank you for the very descriptive account. We of the MBC tribe need to know as much as we can jam into our heads to negotiate through all these trials we go through. Enjoy the healing of your body while it is free of the cancer "therapies". I wish you well!Frances

[Bettybuckets]

I hate needles too! Sounds like they sold it as an easy treatment and it sure am wasn’t! Thank you for sharing so we can all make decisions when the time comes.

[Arisgram]

Hey Sandra, sorry for the delay. I'm feeling ok. I've been napping a good bit the last few days. The lymph nodes have calmed down. I did what you said and drank lots of water. Thank you!

How are you feeling? Has the pain subsided since treatment? I keep all my fingers and toes crossed for you. I