Faslodex Girls Thread
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My MO scans after 4 treatments. I am having PET scan next Friday. It really is hellish playing the waiting game. My tumor markers which were already very high went nuts after the third treatment. I am banking on tumor flare.
may the force be with you, MJH
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My MO scans after 4 treatments. I am having PET scan next Friday. It really is hellish playing the waiting game. My tumor markers which were already very high went nuts after the third treatment. I am banking on tumor flare.
may the force be with you, MJH
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MJH - Fingers crossed for awesome results. Please let us know.
>Z<
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Thank you, dear Z. Hope thing are going as expected for you in Japan. Must be somewhat easier knowing the ropes this time.
Best, MJH
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It is a lot easier knowing the ropes. I am also having a lot more side effects from the treatment like nausea, fatigue and pain because my cancer is more extensive. The hyperthermia has been hard, possibly aggravating radiation injury in my liver. The fatigue, I hope, is a sign it is working.
>Z<
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Hang tough, Z...pulling for great results for you!
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Just going to leave this here. A must read in my opinion. Especially for women and men w large fannys. I was telling the staff for over a yea that I was sure the injections were not reaching the muscle.
I want back on Faslodex and am preparing to meet my oncologist with the arsenal that shows I deserve another shot, literally.
https://voice.ons.org/best-practices-for-im-inject...
Large-volume (≥ 3 ml) intramuscular (IM) injections may not be administered often, and oncology nurses can be unfamiliar with best practices. A study found that only 32% of gluteal injections were administered into the desired IM target. This could lead to the drug being administered subcutaneously or near major nerves and blood vessels, potentially decreasing the treatment's efficacy.
Traditionally, nurses were trained to inject large volumes in the dorsogluteal site. Caution should be exercised, however, due to close proximity to the sciatic nerve. 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.
In patients with excessive subcutaneous fat, a 90-degree angle should be used to avoid injecting subcutaneously. Identifying bony anatomical landmarks and ensuring proper patient positioning offer a safe and effective means of intramuscular delivery. Rotation of injection sites should be considered with repeated monthly injections.
https://journals.lww.com/ajnonline/Fulltext/2010/0...
And these differences were acknowledged in reports at AJN back in 2010.
Diane
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Great information bluebird!
>Z<
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I had my first dose of faslodex on 1/26 and my second dose two weeks later. My third dose should have been two weeks after that because I am in the loading period, but I was away in Japan, so it did not happen for 3 weeks.
Technically my schedule should have been
1/26
2/9
2/23 ... delayed to 3/5 because I was in Japan
3/23The clinic originally agreed to this schedule but today the nurse said that they cannot give me the fourth shot until 4/2 because it has to be 28 days after the actual date of the third dose due to insurance requirements. I am going to call BC/BS tomorrow and see if this is real and, if so, whether they can make an exception given that I am getting the same number of shots over the 8 week period.
Has anyone dealt with anything like this?
>KNC<
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I had the insurance thing with my Evista: the pharmacy wouldn't (or advised me NOT to) fill early, as insurance wouldn't pay if it exceeded the number allowable within the proper period (in this case, 30 days). I would have had to pay out of pocket. Thank goodness for my pharmacist.
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Well Ladies,
Looks like I’m moving on. My recent scans showed progression and new mets with Faslodex, so I’ll be leaving this thread and moving on to another drug Xeloda. I am very disappointed, but not upset. I fully trust that one of these drugs will work, so I’ll continue to stay positive and hopeful.
I hope Faslodex works for a long, long time for the rest of you. I found it to be very tolerable compared to some of the others.
Take care all
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Booboo1,
I'm sorry Faslodex failed you. That is disappointing. There are many other excellent treatments in the arsenal, as you know.
Wishing you all the best on Xeloda,
Tina
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Thanks Tina. And you are correct....many more to try. I feel very fortunate that we all have multiple meds to try, and when one doesn’t work....on to the next. I will never give up!
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booboo - best of luck on Xeloda. thanks for letting us know.
>Z<
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Falsodex is not working for me, either. Meet with MO in the morning to discuss next treatment modality. Bummed.MJH
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Hugs MJH. Very interested in what you come up with as any of us could be in your boat at any time.
>Z<
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Z - during the 3 or so yrs I was on Faslodex there were times my doses were 5 and 6 weeks apart. Car accident w broken bones. bad illness. Weather. My loading doses were on time though. Ins BCBS always paid.
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Hello all,
Well got my CA 27 29 results today. Last time was 591, this time 611. Alk phos still low at 66.
Not sure what to make of this. Will see on on Wednesday for next Fas shot. He will probably see this as "stable" LOL.
Not happy today. Was hoping for a nice drop.
Chats
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chats - I would call that stable too. you need a 10-20% rise in TM's to be significant. you are looking at a 3% rise, which can be normal variability.
sorry the diagnostic tools we have are so ambiguous. it's a huge issue.
>Z<
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Thanks for the positive note Z.
Although it's not great at least it's not horrible. God how your expectations get lowered with this crap. LOL
The thing is that I feel really good. No pain in the areas that I saw on the scan that were mets. I have full energy and even painted a long balcony on the front of my house two weeks ago.
I do have some weird pain sometimes on my chest area and under my arm but the onc thinks its nerve endings as it's around the perimeter of the surgeries and where the sentinel lymph node was taken. Had both breasts removed as a precaution. It comes and goes.
Well, I guess the next thing is to talk about a scan. Maybe wait another month. Will talk to onc about this on Wed.
Stay strong everyone. Prayers up.
Chats
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Hello everyone I've been posting on the Ibrance and Bone Met threads for a while but my onc started me on Faslodex instead and will save Ibrance for later. I got my first shot of Faslodex today, and I have some questions about side effects. Do they usually begin the first days after the shot or later? Are they cumulative meaning they should get worse with subsequent shots or does the body adapt and you get better? I'm particularly worried about nausea. How have the side effects worked in general for you? Thanks in advance.
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Cecil, I'm on my 14th month of faslodex and ibrance. I have no side effects from faslodex.
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Cecil,
I'm on my 15th month of Faslodex. I have never experienced nausea. I sometimes feel more tired for a few days after the shots. If you haven't already, I stronglhy advise that you look at the pointers for dealing with this drug which are posted before the thread, There are a lot of good tips in dealing with it. As for side effects, I'm on a dual drug protocol with abemaciclib so somethimes don't know exactly what is causing a particular side effect. All in all, I have found this very tolerable.
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Ceci,
I have noticed that the first couple of days I have some weird pain in my lower body - around groin but then it goes away. No nausea. It's been pretty easy actually. Better than when I was on Letrozole and Ibrance.
As an update to my previous post about tumor markers. Had my shots today of Fas and the onc concurred with Z that the CA 27 29 seems to be leveling off. So we are going to go forward without doing a scan for another couple of months since it takes Fas some time to really get going. He's hoping for a downward trend - I'm hoping too!
We also discussed adding Verenzio but he said we should stick with just the Fas to see if it will work by itself. Good with me because a once a month shot of Fas and a once a month shot of Xgeva is easily doable.
Onward good people.
Chats
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I am on abemaciclib and Faslodex for almost 3 months. I have found after my shots that I have a little more pain in my lower belly and a little more nausea but it is very doable. Also the last few months I have been getting emotional a few days after the shots. Actually, I turn into a crazy lady! My daughter had to talk me down a few days ago lol (had the injections Saturday) but that only lasts for one day thankfully! Overall it seems to be an easy med for me. Good luck
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Moving this post info to here too. I took this info to my oncologist and he agreed on the injection site being changed and for rotations to be done. He started me on only 250 for first loading dose. Will do 250 or 500 depending on my outcome in next week. I am extremely drug sensitive. Then 500 at 29 days or not. Adding Arimidex once I have been on for a month, then Metformin.
Interesting - the oncology center called manufacturers of Faslodex and were told by someone who probably knew nothing - they asked about the ventrogluteal site injection and the person on phone insisted it had to be done by dorsogluteal site, never the other. But both directives are supposed to be in the Faslodex rx box. Either way, my oncologist and nurses used the new ventrogluteal site injection protocol and it was painless, no seepage. They also told me that hitting the sciatica would not be a fear this way, though the dorsogluteal does have that chance of happening. So I had no fear. I was laid on my side on a bed and the bed flattened. No ice. But the serum was out of cooler for over an hour. All went very well.
If you missed this above, I am bringing down here so people know what I am talking about.
https://voice.ons.org/best-practices-for-im-inject...
Large-volume (≥ 3 ml) intramuscular (IM) injections may not be administered often, and oncology nurses can be unfamiliar with best practices. A study found that only 32% of gluteal injections were administered into the desired IM target. This could lead to the drug being administered subcutaneously or near major nerves and blood vessels, potentially decreasing the treatment's efficacy.
Traditionally, nurses were trained to inject large volumes in the dorsogluteal site. Caution should be exercised, however, due to close proximity to the sciatic nerve. 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.
In patients with excessive subcutaneous fat, a 90-degree angle should be used to avoid injecting subcutaneously. Identifying bony anatomical landmarks and ensuring proper patient positioning offer a safe and effective means of intramuscular delivery. Rotation of injection sites should be considered with repeated monthly injections.
https://journals.lww.com/ajnonline/Fulltext/2010/0...
Diane
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Thank you all so much for your replies, I've had no side effects so far with my first shot, hoping it stays like this.
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I was started on Ibrance and Faslodex and Xgeva in early October 2017, after 5 happy years on Arimidex. (My cancer had found its way around the Arimidex and suddenly I could not catch my breath while hiking.) My CA 27.29 was 553, and I had Malignant Pleural Effusion. The first injections of Faslodex were fine, but the second were more in my back fanny (gluteal muscles) and I could not sit for over 5 days. I looked up the proper injection sites, asked the Head Nurse to set up an Inservice to educate her nurses and have my first nurse give it, but that didn't happen. So, I asked for the first nurse to be the one to give me my injections in future. The next dose of Faslodex was given by her, then I went right over to the Radiation Oncology Clinic and got tattooed in the needle marks. Everyone laughs but I no longer have any problems being certain that my injections will cause me any residual discomfort after the first aching. And my CA 27.29 is already down over 300 points so the medications are working after only 5 1/2 months. My Onc is hoping for 3-5 progression-free years until the cancer finds its way around this combo. Who knows?
I now am sporting a Pleurx innertunneled catheter in my chest and my husband drains me every 4 days. We are hoping the pleural space will eventually dry up and I can have the catheter removed but for now it is a Godsend, makes life practically normal for me. I highly recommend it for any with MPE, makes a huge difference after weekly thoracenteses.
Let's pray for new medications and a cure. Both can be in our lifetimes.
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Hi LindaF. All very interesting information and relevant to me.
Best,
>Z<
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Linda, smart with the tattoos! None of us is laughing!
I'm in VA, too, in the Tidewater area.
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