On Thursday went to start my 2nd cycle of Topotecan, which I thought was the norm type of day - blood drawn, labs, visit Dr and then get treatment.
Well when my Oncologist came into the room sat down and said he thinks it isn't working because lately I was getting nauseous. So he doesn't know if that was do to the chemo or tumors. Plus this is my 4th treatment. So we need to think of my quality of my life. But there were no other treatments or suggestions he brought up. Before hand he said they had so many tricks up their sleeves.
So I said, can at least we try another cycle, he said sure it is my decision. Then asked about clinical trials which he said they don't do them there. What the heck they said when I first started they do them there also. Again another misconception.
So he is going to put a referral for Mayo clinic which I asked which is one of the top 3 hospitals in the US which thankfully is only 5 hours away and my family is from there. Now instead of having one Dr. will have a whole team and get an Oncologist who specializes in what we have.
So really a blessing in disguise but what a crappy day to go thru.
Be would be different if he said, I'm out of options and we are going to refer you to here. There was nothing, I had to be my own advocate.
Just needed to vent to my teal sisters. Thanks for listening.
Cheers!!!!
Shelly
BTW, here is a picture with my new wig. Absolutely love it.
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PCCDaisy
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You are looking lovely Shelley and I'm very glad you were your own advocate and are being referred to the Mayo clinic. The advice from this institution often comes up when I Google so I'm hoping they have lots of options/ suggestions for you. Surely if you are feeling nauseous the Dr needed to run some scans to see where the cancer is at and then he would know if it's cancer or chemo? But it seems through a hard day you are in a better place.
Hello Shelly, you are absolutely beautiful. Sounds like a good decision going to mayo clinic. I guess the doctor just didn’t know how to tell you he didn’t know what to do. Praying for complete healing in your journey. God Bless!!!!
I hope that all goes well at Mayo Clinic, Shelly. It has an excellent reputation. Your new wig looks great! Excellent color. I would never have known that it wasn’t home grown. 🙂Best wishes from Louisiana,
Oh yes. It is lovely. I smiled back at your smiley face and never spotted you were wearing a wig! Good for you fighting your own corner. Sometimes you just have to. All very, very best wishes for successful treatment. Best wishes from the UK x
I agree with Cumbrianlass, I was too busy looking at your lovely smile to notice the hair. It's beautiful; looks so natural.
What an inept way for your oncologist to say he thinks you are out of options. I hope the Mayo clinic comes up with some more treatment for you. I've heard good things about them even across the pond. Go for it and I wish you all the best for successful treatment. Sending positive vibes. 🤗 Jackie x
Hi Shelly you look absolutely beautiful. Great news your going to the Mayo to be looked at by a team of oncologists I’m sure they’ll come up with a good plan.
Few Doctors understand what it is truly like to live with Cancer of any sort. Some try very hard and we are grateful for those with empathy. The degree of nausea, and other side effects aren't always understood. Often the remedy is another pill that also has side effects. Well there was a silver lining to the cloud with you being referred to Mayo Clinic. Its a weird disease as what works for one does not always work for another. DO not ever give up. You do this for your family and yourself.
You look fabulous and it really doesn't look like a wig just thought you had fab hair.So glad your taking things in your own hands think at times its the only way. Keep fighting theres something out there to treat you its finding the right consultant to give it you. But good luck sending love & hugs SheilaF xxx
That's is a great wig! Looks very natural and you look lovely. I can certainly understand your frustration with your Dr. Great you've been referred to the Mayo clinic though and fingers crossed they have lots of options for you.
Glad your onc has referred you despite his awful people skills! Good luck and fingers crossed for successful treatment. Love the wig - looks so natural and what a lovely colour. X
Hi Shelly, Firstly I looked at your picture and thought lovely smile, then you mentioned wig. It didn't look like a wig to me very natural and lovely colour.
You did the right thing we need to be assertive when dealing with the oncologists sometimes. I'm just sorry the Mayo Clinic isn't closer, but it sounds like a very good place so you'll get the best care. All the best Sue xx
Wow. Well, I had a pretty bad year in 2020, nothing was working and 5 tumors kept growing. I was/am on topotecan which also didn’t seem to be working, then last September my oncologist continued topotecan but added carboplatin with it. End of December my CT scan could detect NO tumors. End of March CT could detect no tumors, end of June CT -still no tumors. So I am on a little chemo break for the moment until we see the next scan 🤞🏼. So, there are still things to try. Sounds like you need to find a reputable oncologist and go for a second opinion, at the least. Prayers, hang in there.
What a gorgeous photo, you look beautiful. Sorry your oncologist was that way, sounds like his communication skills need work. Glad you have a second opinion which I hope will reassure and make things clearer and well done for advocating for yourself - exhausting but necessary it seems x
Unfortunately we all have to be our own advocate. Researching beforehand is very helpful and I'm sorry your oncologist isn't very keen on saving your life. However, you might be nauseaus just because the chemo is working. Get your ca125 numbers right away so you know where you stand. Mayo clinic is excellent by the way. No worries, all will work out fir you.
Loving the wig! You seem to be ahead with getting your treatment sorted. Good luck with everything. I'm in the UK so our systems are different but 2nd opinions are always an option. Different approaches from different Dr's . Sending positivity across the miles.x
I think your picture is so sweet and puts a smile on my face. I live in Michigan and have heard excellent things about the Mayo Clinic. Sorry that your oncologist wasn’t helping you much. Hope things go well for you at the clinic. Donna xx
I’ve just gone through a similar experience here in the UK Daisy. A second opinion. A different hospital. A different oncologist who’s willing to take bigger risks. I hope everything turns out really well for you.
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