How are people with liver mets doing?
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Susan sent me a PM which reminded me I had checked out of these boards gor a while. Thank you Susam for checking in on me. I had 7 pages to catch up on. I do think of everyone but got lost in the events of my life.
Grannex/ before I fotget, I had do
Etching ( they think it was a lymph node) near my heart and chest show up on a CT scan in Late April. PET scan confirmed there was something active there. They could not biopsy it due to location so I underwent 20 days of radiation to my chest in May. My most recent PET scan 2 weeks ago showed that it had less uptake and was smaller. That was good news as previous scan showed no difference in August.
For the rest of you, know that I am pulling for you all.
I am starting my 8th radiation treatment to my brain tomorrow. It will continue next week. Good news is my CT scan from my neck down showed I was stable. I’ll take stable. My pneumonitis seems to be very slowly getting better. I am still anemic with low hemoglobin but it seems to have stabilized. I wonder what it feels like to have a normal RBCccount.
I have been asked to be the keynote speaker at the American Cancer Society of Seattle’s big fundraising gala on Oct 30th. A smaller, yet still large ,ACS event of the same type also asked me to speak at their gala on Saturday. After their speaker ghosted them. I raised over $10,000 for the ACS this past Saturday at the Making Strides Against Breast cancer walk snd my team raised over $11,000. I hope these efforts by me will help us all and will help to end breast cancer.
I’ll post the video of my speech after the gala.
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LFF, that is good news. Sorry about the low red blood cell count. My wife went through a long spell of that, hemoglobin got down to 50 and had to have several emergency infusions. Turned out she had an internal bleed.
Congratulations on the fantastic fundraising. That is incredible.
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husband , that sounds like me. When my platelets got down to 30 and hemoglobin to 50, it turned out I had a varacies bleed as well. They thought I was going to die that night. Pulled through obviously but it’s never far from my mind how close I came :
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LFF- so glad you’re hanging in there
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When that happened, the bleed, my wife's heartrate went up to 130 bpm, while she was lying in bed. I was lucky, I had purchased a finger oxygen meter that also shows heart rate. I bought it because of covid and wanting to know whether someone needed hospitalization. You can buy these fingertip 02 pulse oxi-meter for cheap on Amazon, and they are really handy.
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ahhh got ya ! I have a BP machine. That was the first Indication to the nurse (I was in the hospital then thank goodness) - having a super lower than normal BP, that raised some flags. Then I was in pain and tried getting up and turned white. Threw up blood. BP dropped to 60/30. They have no idea how I stayed conscious, but told me anything they did would probably not save me. I said “send me to the icu” and they did, and I lived to tell the tale. My husband said he’s glad he sent the dr in to talk to me because he had made it sound so bad to him that he was going to forgo any measures.
It was a close call and I’m still a bit traumatized but the bleeds have been banded and other scopes before I was discharged showed no others thank goodness.
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BAP, that sounds so scary close to the end. Lucky the Doctors aren't always right. One told my wife when she had bad ascites that she would need to get a wheelchair, and that she wouldn't live to see her first grandchild. Proved them wrong! Now we have 3 grandchildren, oldest is five.
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amazing! The dr said what I did was remarkable and he’s never seen anything like it in his career. As you know I have ascites so your wife is very inspiring to me. I think mine is more due to the clot in my portal vein so hoping to be stable enough for the blood thinners soon while I’m on ibrance. But I have the indwelling drain now which has been such a positive in controlling how much fluid I have. I’m still so happy for your wife. Three grandchildren. Amazing
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BAP, LFF, Nicole, so glad to hear from you, so glad you are all moving forward. Saulius
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Salius , you’re always the best cheerleader
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thanks Salius.
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LFF, BAP,Nicole. Your walk is hard but I am encouraged by your determined spirits! Keep on keeping on!
Grannax how are you doing?
Everyone here is so encouraging and informative! If it weren’t for this group…FYI-I’m already fighting scanxiety- Nov1.
Dee
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thanks Dee , had port bloodwork done today and the nurses in the chemo unit commented on how much better was I looking. So I’ll take it as a win. Now I’m sitting here for my fluvestrant shots. Not too much of a fun time there lol.
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shots were eventful. Right leg went dead and I couldn’t weight bear. I’m fine now but Yeesh. My two week bloodwork was good for the ibrance except the platelets took a dive from 250-103. I have one week left of my first cycle so I’m hoping they hang on so we don’t have to lower the dose.
The great news is my Bilirubin went to 9!! The lowest it’s been in over two months. It was 85 eight weeks ago and I was In failure. Now it’s normal and my other liver functions are improving !0 -
Way to go liver B-A-P! I keep hearing about how livers have the ability to heal, and it seems to be true.
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That should not have happened, B-A-P. I suggest interviewing the nurse next time: "How will you avoid injuring the sciatic nerve?" If they do not answer that they will inject only into the Upper Outer Quadrant, ask for someone else. I'm so glad to hear you are doing better liver-wise.
P.S. I sent you a PM with more Faslodex tips.
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Leftfootforward, I'm so glad to see you. I am absolutely stunned at how you manage to do fundraising and speech making while dealing with your treatment!
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By the time I was in nursing school, we were taught to never use dorsogluteal but rather use ventroglutueal. Practice Update also suggests this:
Published in Oncology News · May 08, 2017
Injection-Site Pain With Large-Volume Intramuscular Injection of Fulvestrant Can Be Minimized
"The ventrogluteal site is evolving as a safer intramuscular injection site, as it is accessed easily and is distant from major nerves and blood vessels. " https://www.practiceupdate.com/content/injection-s...
apart from oncology, large volume IMs are frequently given in psych. Older nurses were still using d-g but on my rotation we were taught ventrogluteal. It takes practice to landmark it & it seems a weird spot - every thinks they're going into bone but there's a really large muscle there & absolutely no risk of nicking the sciatic nerve
vastus lateralis (outside of thigh) is the another site that can take a large volume IM injection
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I did read that ventrogluteal is safer but that many nurses are more comfortable with dorsogluteal. Never has any nurse, even a younger one, offered the option of ventrogluteal to me. It's a major cancer center so I do not understand this. I've seen maybe fifteen nurses. I wonder if part of the reason is that it is a smaller area, they don't want to overuse it with monthly shots. In any case, if the nurse is not comfortable with that site, I'd be nervous about her using it. There is one woman on the Faslodex thread whose doctor decreed ventrogluteal for her because she got sciatic nerve damage, and one woman whose cancer center prohibited dorsogluteal. As far as the thigh, could it be the case that the Faslodex injection is too high volume for it? The administration instructions on the Astra-Zeneca web site specify "gluteal area".
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in case anyone is interested here is a link to the Sochi I taped about my journey with breast cancer.
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LFF,
I just watched. Thank you for doing that. It was both moving and informative.
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LFF, I was so moved, and yes, inspired,by your presentation. Someone must be cutting onions in here...sniff sniff. Thank you for the link.
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So just for reference , that is where I was injected (please excuse the dirty mirror , I have a six year old lol) It seems more medial glute and actually quite a distance from where the sciatic nerve would run. When I was having the issue, it was literally the medial side of the glute that felt buckling and nothing else. The medial glute is very important for gait and usually why the elderly need walkers as they age since it can atrophy quickly if one isn’t walking much. Anyway, it was a mess and the on call dr suggested next time I do one shot at a time at 30 mins apart which I think is unnecessary. Def a weird reaction .
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LFF-Great job! I had no idea that the ACS offered all those services.
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Leftfootforward- You are an inspiration.
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BAP,
I had those shots for a year and a half and I can tell you that I didn't get any anywhere near that. My shots were back further.
Also, I never had the shots both administered at the same time. The recommendations posted somewhere on BCO (I don't remember where now) said to have the shots one at a time, taking the weight off of the leg the shot was going into, and then switching. I know that people do the shots at the same time, but I just always thought that was because the nurses wanted to do it quickly. You can also ask them to slow down the administration of the shot -- if it stings at all going on you've got to speak up. This isn't a race.
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thanks Bev ,
They gave me the option of doing both at the same time. I figured it was better just to get it over with but perhaps I’ll ask for it one at a time next time. I do feel like the shot is a bit more on the outside of the glute than last time (where I had no issue) . I think the nurse doing the right was a little inexperienced with the type of injection since the other one was coaching her a little. I’ll ask for them to slow it down. It did take the two mins but I have had a few messages saying that it should be slower . So I’ll definitely see if that makes a difference. I’m confident it will and I don’t mind taking it for a bit longer. The shot is uncomfortable but not terrible enough to try and get it done quicker . Inappreciate the tips. I rather not deal with that again
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thank you moth. I’m hoping no need but my veins are getting pretty skinny
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B-A-P, trying to get it done quicker is counterproductive. Waiting 30 minutes between shots makes no sense. Warm those syringes, take your weight off the side getting the injection, and tell the nurse to take ten minutes per side, please. Your photo does look like the diagrams I have seen showing the ventrogluteal site. Moth can say for sure...
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Well-done, LFF!!! It helps us find meaning, doesn't it, to do things too help others who have cancer too? I am so curious to know if you memorized the whole thing, or had an outline, notes, or teleprompter. It was not a short speech.
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