My first ct scan since starting chemo was good. 😃. Organs and lymph nodes are all clear and numerous boney lesions are sclerotic. My family doctor said that means there is scarring which in turn means healing. 👏🏻👏🏻
At least that is our interpretation. I call the message line to remind my oncologist that I had my scan on Monday (the only way to contact him). A woman from his office called me to say that he asked her to let me know that he doesn’t give Scan results out over the phone ??? That’s news to me as he has done so every scan since my diagnosis. She was very nice and said she asked him if he would like to push up my appointment but he said no. She implied that must be good news without saying anything. Then she lowered her voice and said my family doctor would also have the scan results. I don’t call my family doctor Normally as my oncologist said she doesn’t understand the reports because she told me there was some progression when he said there wasn’t. (Their actually was some small progression which is what the report said)
I find that since I switched to chemo he isn’t so personable or concerned about me. Both he and his nurse seem to be more distant, maybe I’m just noticing more since I stopped Ibrance and Letrozole! I saw a different oncologist last month as mine was on vacation, now I’m wondering if I said something to that guy that my oncologist didn’t like. I have no idea but I don’t need the extra stress in my mind.
I started Abraxane in May and just had my third round. I receive it once a month. When I asked my oncologist how long I would be on it he told me forever. I don’t know if there would be breaks or the time between extended if all the mets were gone.
Mine fell out. My nurse told me day 21 you will wake up with hair in your pillow. On day 21 I ran my hand through my hair which was short and got clumpfulls. This happened all day. It was crazy so I buzzed it an inch long so it wouldn’t be so bad watching it fall out
Great news Sarah, thanks for sharing! I'm really glad the Abraxane is working well for you. May it continue for a long, long time.
As for your oncologist...try not to let his bad attitude color your good day. It could be nothing...he could have a bee up his butt...important thing is he got you on a treatment that is working. I know it's easier said than done, I've worried too that I said something wrong to my onc or was too pushy about something I read on Dr. Google. But this is a time to celebrate.
I'm laughing at your post too....first time I've seen "Ibrance" auto-corrected to "I ran errands"!!
Ignore your oncologist...you don’t have to be his friend...he’s getting paid plenty to look after you...also he’s human and maybe he’s having personal problems of his own?...although it shouldn’t affect his attitude to his patients
I remember when I was in dreadful pain myself and still treating patients and it was very difficult to be cheerful
Hi Sarah: Nice to hear good news. I know it is disturbing when your oncologist seems to be ignoring you. After all they are our 'life line' so to speak. Maybe besides being overworked he is struggling with another patient who is not doing so well. That said, i think we have said this before, maybe try to get another Oncologist.
The good thing is your treatment is working and that is all important. Enjoy the weekend. By the way, are you feeling better now? You were having a lot of problems with eating and diarrhoea.
Thanks June ❤️. I am feeling much better now. I’ve developed a wheezy cough but I think it’s drywall dust causing it as I was at my sisters all day yesterday at her pool and was fine but it started again when I got home. We are having water pipes replaced and lots of drywall dust laying around.
Wow, that's great news (about the scan, not the doc!!) for me to wake up to this morning! Congratulations and wishing you many more great scans!
Great to hear your scans went well! I always get my results within 24 hours at the center I get the scans at. They give me a disc and a written report. 😀 I couldn’t wait a week or 2 to see the Onc. And yes when u are put on chemo that is supposed to last 5-10 years like mine u sometimes feel like they put u on autopilot. 😂 However when I go to my appointments I always make sure I have my questions written down and that we get to all of them...😀
Thank you. I wish they would give us the results like you get. I always have a long list when I go to my appointment also. I figure he is getting paid so I will get my moneys worth lol
Hi Sarah,
That is wonderful news! It sounds like the chemotherapy is really working well for you. You must be so pleased.
It seems a bit odd to be told that your oncologist doesn't give results over the phone when that has always been the case with you. I would be a bit confused by that, but maybe wait and see what happens next. I have asked my GP about my radiology reports and she has always said it's not for her to interpret them. She was always happy to print the results for me, but only after I had gone over the results with my oncologist. Now I am signed up to the patient portal I can view the results online and won't have to keep asking for them anymore.
I wouldn't let your oncologist's attitude get to you. You don't need the stress. I think there is an element of distance between oncologists and oncology nurses and their patients which has nothing to do with us personally. I just think they need to maintain a distance between us to a certain extent so that they do not become too emotionally attached to us. I'm sure you have not said anything to cause offence.
Sophie
in reply to
Thanks Sophie. It all seems so odd but I will talk to him when I see him in August. (Sent you an email from a different email address as mine wouldn’t let me send the email. I hope you got it)
in reply to
Hi Sarah,
I just checked my email and I haven't received anything from you since 18th July. Can you resend it when you get a chance?
Sophie
in reply to
I will try again. I sent it with gmail.
in reply to
I received both messages. I’ll respond to you later on in the day.
Wonderful news! I haven’t heard, or maybe I missed what if any side effects you are having from the Abraxane (I’ve been sporadic on here the last couple of weeks), but I hope they are minimal enough that being on Abraxane forever is good news for you!
As far as your doc, if you have gotten along with him just fine until now, I wouldn’t worry. Everybody has their off days. He might have told the nurse he doesn’t give the reports on the phone because he had you momentarily confused with another patient that he has good reason to not give them on the phone. Or maybe he just lost a patient that day. I try not to assign motives and responses to my docs if I have a good long standing relationship with them. The good docs are very busy...everybody wants them to be their doc!
Again, I’m happy for your good news. Is always such a relief when bad news of medication change turns into the good news of “it works”!
Thank you Elaine. ❤️. It was scary changing meds when the other showed a lot of progression. The side effects aren’t as bad as others : hair loss, Mild nausea, severe diarrhea, bone aches and pains, shortness of breath, fatigue.
I have found a trend with my family doctor. He prefers that I ask the oncologist about results as he admits he is no expert in oncology. Any question I ask , he tells me to ask the oncologist as she is the expert.
My oncologist always tells me the results in person. It is always at the next scheduled appointment that I am told.
I am glad to hear that your report was good. Is this common that we can end up on the IV chemo forever? I know someone at SHARE who was on it for 5 years and they finally took her off.
I am new to chemo so I don’t honestly know. Ibrance and Letrozole kept things at bay for two years but then I had a lot of new lesions and existing ones grew so I was switched to chemo. Mine did all stay in the bones which is a relief.
I wonder how these decisions are made as I did not think the next step would be IV
chemo, especially if it was just in the bones. I started off with oral chemo for a year and a half to stabilize my lung mets and at that point I was put on Ibrance and Letrozole. I know we are all different, What subtype are you?
I could have kept Ibrance and moved from Letrozole to Faslodex but it had spread too much and too fast so my oncologist wanted to attack it. It may be only in my bones but it is in nearly every bone in my body from the top of my skull to my ankle and including everything in between. I have had my left hip replaced due to the damage of the cancer. My pain was extensive and my mobility is greatly limited. I am ER/PR + HER2-
Same subtype as myself. Ok, you have answered that question. It was because of the spread being too much and too fast. I am glad that your first scan was good.
I had one scan that showed a new met to my skull but my oncologist wasn’t worried about it. Then I had new ones to my spine (ct report stated this) but the radiation oncologist said they weren’t new. Then three months later I had a ct Scan on my head and a bone scan which showed numerous new spots , skull, face, arm, spine, ankle, ribs. Then he got serious about it.
My pleasure to share in hopes it answers some questions or alleviates any stress. Mine are twice a year as I have extensive bone mets as I mentioned. If you have one or two they may not find it necessary. My last bone scan was pushed up several months as my pain increased a lot in both Intensity and locations. When they had to almost double my prescription pain meds then they said that the bone scan was needed.
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Terrific CT Scan Results
CT scan not what I'd hoped😔
Results Total body scan and CT scan
