Faslodex Girls Thread
Comments
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Kaption,
I've been taking Claritin daily during the spring and fall allergy seasons with absolutely no problem.Don't suffer; take it!
Tina
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Thanks, Tina
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Sorry to jump in, but I am wondering if anyone had progression when first starting Faslodex before it started to work?
Long story short: Put on Faslodex after being made stable on chemo but taken off after completed the loading doses because of rising calcium levels and bone pain. Scans (CT and MRI) showed no progression during this time but anemia, calcium issues, and pain indicated likely progression. Given a couple of rounds of the same chemo to get the cancer under control and then on extended chemo break while getting rads to spine and then surgery for fractured femur. Now back on Faslodex as the onc felt we didn't give it enough time to work
Thought I would see if anyone else had a similar experience with a rough start on Faslodex before the treatment started to work.
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Hi Golden, If you only made it through the loading doses last time, I would say Fas was not given enough time to see any results. I do remember having more pain the first few months. I thought for sure it was progression but turned out to be healing as my scans improved greatly after 3 months. Sorry I don't have a better answer to your questions, but it sounds like you have been through so much recently I just wanted to say hi and send a big gentle hug! Hope Fas is the right tx for you this time and life settles down some.
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Golden, this is just my opinion, but I agree with your onc that going back on Faslodex is a very reasonable plan. The loading doses are necessary to get the level of Faslodex up to where it needs to be in your blood to be effective. So if you quit right at that point, you really had little or no benefit from that increased level you just got to. In other words, you were mostly at a half-dose. And with other stuff going on, including a fractured femur, I would think it would be hard to sort out what was actually causing the increased pain, higher calcium levels, etc. If I were you, I would be happy to give Faslodex another try.
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Cross posting here.
We met with the radiation onc this morning. I'm tattooed and ready to start treatments on T3 and my left pelvic bone early next week. Side effects will be fatigue (as usual) and a slightly "sunburnt esophagus" from the T3 zaps. So, maybe living on milkshakes for a few days!
Outlook is good for healing these 2 spots.0 -
GoldenGirls: I was first put on Fas in 1/14, my local onc did not think it worked and pulled me off in 4/14 because tumor marker did not come down; and sent me to MD Anderson for second opinion. MD Anderson onc thought my local onc pulled me off too early, put me back on (re-started with loading and added Xgeva) and with instructions not to look at tumor marker for at least 4 months before making any decision. I have been on Fas for over two years and is still on it and I don't have any bone pain. Give Faslodex a second chance, it takes time to show results.
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Golden, I stayed on faslodex for six blissful months to see if it could stabilize or reverse my mets.
It was bliss to take it after the AIs, because - no unwanted effects!
Unfortunately, it had no affect on my still slowly growing mets, cancer tumor markers or symptoms, so I reluctantly stopped and went on to try estrogen...as told in this story:
https://community.breastcancer.org/forum/8/topics/...
Golden, you just got started with this often helpful treatment!
Hang in there and I hope you get a positive response to faslodex - just give it enough time to work.
good healing wishes, Stephanie
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Steph I have this estrogen article saved to talk with MO about at end of month. Thanks for posting it- The research MO at DF said that estrogen plays a role in our cancer even if it is tests er neg after time. Maybe this is what he was referring too. I am going to ask about it.
Kap- good luck with the rads...
Hugs, Carol
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Carol, yes cancer keeps changing characteristics over time, even within the same tumors. My lung and pleural tumors respond completely differently to femara than the liver tumors. Partial control as I slip 'n slide toward death is still welcome! One of my goals is to live and die without a nasal cannula pumping machine- generated O2 up my nose. That would be traumatic for me.
I believe in experimenting for the best possible quality and quantity of life.
Cancer is smart, but our bodies are smarter and kinder.
And our minds can help us discover workable tactics.
warm healing hug, Stephanie
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Kaption, Have these 2 spots been painful for you? Always interested in hearing the goal of rads, whether for pain relief only or curative intent. How many times do you go and do you know what kind of machine they will be using? Seems like there are many different types of rads now. Best of luck to you!
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jobur,
These are both pain issues. All of my rads have been for pain (except my original bc in 2005 after my lumpectomy). Since, mbc- all for pain- usually in crisis mode. My T3 pain came on slowly and we had been watching it. The PET/CT confirmed it
The left pelvic/ iliac tip came on quickly and wasn't mentioned in the last scan, so I went in a little worried that the cause wouldn't be clear. My RO had already found the brightly glowing spots. They are actually just above the rads from last November. Radiologist didn't mention them. But, again, my RO says the radiologist has no pain info from me, so doesn't necessarily know to look at all my bright spots. So, the goals are clear.
I don't know the specifics of my machine. What question should I be asking?
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Hi Kaption,
I'm so glad you have a game plan that works for you.
I wonder if your radiologist talked with you about a single dose to relieve bone pain.
It's explained and explored by a woman with MBC who followed this Choosing Wisely guideline herself:
Adventures in Choosing Wisely
by Amy Berman | October 23, 2014
I don't share this to side track or confuse you about your game plan!
Different treatment option are just something I wish we discussed more often at bco.
warmest healing wishes for all, Stephanie
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Thanks so much, Stephanie. That is an interesting idea.
I've been with my RO for 3 years and he has rescued me from a couple of crippling crisis situations. He actually seems to understand my cancer better than anyone I have met. I think I will follow his plan at least this time.
But, I really appreciate the information.
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I guess that I will be leaving you sweet ladies. I have been dealing with nasty back spasms since April and no one could figure out what caused them.
I have been going for PT, to a chiropractor and a physical rehab doctor. The rehab doctor gave me three injections into the muscle on my left lower back (which is right above where I get my Faslodex shots), and said to go ahead and get the Faslodex again.
The day after I got the Faslodex, I got the spasms back. So maybe they didn't cause the spasms, or maybe they just aggravated that area, but my onc said that I can stop getting them.
I can continue on with my Kadcyla chemo that has kept 7 out of 8 nodes in my chest and neck stable.
I have been on Faslodex for over 4 years, so don't let my experience scare you. Just be aware....
Hugs and prayers to all!
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Denny,
I'm very sorry to learn this. It's unfortunate you have to go off Faslodex, but it does seem to be related to your spasms, and I understand how debilitating and discouraging they can be. For years have had an ongoing issue with nearly constant, gnawing pain deep in my lower back that no one (rheumatologist, orthopedists) and nothing (hip replacement, PT) can fix. My oncologist has always pooh-poohed my assertions that the pain could be related to the Faslodex injections, so I stopped asking about it.
I take NSAIDs and Cymbalta now, which help. I wish you could find something similar so you could stay in the Fanny Pack. I will miss your presence on this thread.
My best to you!
Tina
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Denny, that's too bad, but if the shots are causing you problems, time to move on. We wish you the very best.
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Denny, I'm sorry you will be done with Faslodex but it sounds like Kadcyla has kept you stable and that's great. I've been on Fas 5+ years and each time now SE's seem to be a bit tougher and I wonder if I'm reaching that critical point as well. I will ask MO next time about it. Please stop by and let us know how you are doing and best of luck to you.
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Thanks! I will continue to keep this as a favorite topic and am always here for all. My onc doesn't really know if the Faslodex was helping anyway.
We will see if my nodes get worse, which will always be a worry.
Meanwhile I will surge on to being a 15 year survivor of Stage 4 as of Dec 20.
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Denny, 15 years---wow!
Tina
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15 years!!! May I grow up to be you?
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This Fanny Packer's wagon is draggin'.
All summer long my energy's been ebbing and now seems lower by the day. While I resolutely go out and "do," I find my spirit willing but my flesh weak. My feet go numb. My back is sore. My breathing's a bit labored. I just want to sit down.
I told my onc at my last visit that I felt inordinately tired and he blamed it on the heat. Sometimes I wonder if he even believes I have cancer, he seems so confident in my well-being.
My blood tests usually show below-normal levels of Hematocrit and RBCs, but nothing profoundly out of whack. My LDH is always elevated, but my onc says that's not an issue unless it becomes twice what's normal.
Whatcha' think, Pack? My nutrition is good. I now take Cymbalta for arthritis, so I'm already on an antidepressant. Can a touch of COPD do this? Or too much fat? Or age (wanna guess)? Or years of Faslodex?
Or all of the above?
Not ready for the rocking chair,
Tina
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Second loading dose yesterday! Happy to report no nausea this time. Can anyone comment when they saw a TM reduction after starting and did they continue to go down? I know TM's are not reliable for some, but it would be a nice indication for me that something is going in the right direction. I also had to take 400mg of advil to fight off the aches in the area of my bone mets, which started the day before I got the shot. Third dose and markers are in 2 weeks. I was on Ibrance and letrzole for 10 months, with stable and healing scans at 7 months- then some progression to the liver with a little more uptake in my lower ribs as well. To be honest, I feel no more energy after being off of Ibrance so it is either the cancer or the loss of hormones that have me dragging.
Hugs, Carol
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Oh sweet Carol,
You've jumped deeper into unknown seas.
It takes between 3-6 months to learn whether faslodex will work for you. It can take time to find out.
I spent 6 rather easy treatment months waiting to see if faslodex would work on my slow-growing mets. It didn't.
So sad, but glad I was sure it wouldn't work before moving on to the next best thing. That didn't work either.
It's so hard to extrapolate from statistics or others' experiences just what one's own experience wiil be.
Sending a rainbow hug of light this morning, Carol, Stephanie
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Hi Carol,
Glad you got the next loading shot without nausea.
My story is somewhat similar to yours. Twelve Ibrance treatments, then progression and major TM rise. I had about a 6 week break between Ibrance and Faslodex, and near the end of that break I felt actual energy. It was amazing.
On Faslodex I have had some fatigue, but nothing like Ibrance- so far. (125 dosage the whole time)
My TMs have continued to skyrocket so far. Folks here and my MO have said to ignore them for now. I'm headed in today for 10 rads treatments in two areas, so it may be quite a while before the TMs have any meaning.
The first PET after starting Faslodex was pretty stable. The 2 places I'm getting rads on are old lurking issues that have slowly gotten worse.
In summary
I have found Faslodex easier to handle than Ibrance and, so far, the results are promising. Here's to YEARS on Faslodex!!! This is my third treatment type in less than 3 years. Need some mileage on this one. 0 -
Hey Tina, One thought for you, how is your hemoglobin? After I started Ibrance both my hematocrit and hemoglobin dropped outside of normal. When I complained of fatigue, my onc checked my iron and more specifically my ferritin level and found it was low. She prescribed an iron supplement for a couple of months and my hemoglobin went from 10 g/dl back to 13g/dl and I felt much better. Now mind you I am not suggesting that you go out and buy iron supplements! I got some blowback here on the forum about how iron can feed cancer or some such, so you will of course want to consult with your mo on this. Other than that, I think you have already named all of the usual suspects! And I'm sure you know the usual script for fatigue - exercise! Counterintuitive but it does seem to help. Best to you and your willing spirit!
Carol, My TMs have never been elevated, so I can't be of help there, but my PET after just 3 months on Fas showed a lot of improvement. How long have you been off Ibrance? I took a month off in February and it took almost the entire month before I noticed my energy had improved. So patience, and yet more patience. I do vaguely remember that during the first few months on Fas I had quite a bit of pain and was not a happy camper. I was sure I was having more progression, so some of this may have been in my head. Hang in there!
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Steph- Isn't it amazing how well you get to know someone so quickly? It didn't take you long to figure me out! I like to think that I know the unknown seas and by jumping in I will surface with the answer I want to see! Now, with that being said- I like to think of faslodex as the same as putting a drop of clorox on a pair of blue jeans. Patience is not one of my attributes. I do know that MO said he is watching it like a hawk.. so I assume I will get scanned earlier than 3 months.
Hugs, Carol
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And, dear Carol, don't overlook how you feel day-to-day - changes that may mark response to treatment.
I just wrote a long response to Blond Doris and Fitz Twins about goals of MBC treatment - reminding us not to confuse NED, disease response, progression-free survival and overall survival. And, more importantly, not to confuse statistics and reports from others with your own experience!
At the end of the day, how you feel and live is what really matters!
And I, for one, want you to have a marvelous life, even with our dreaded disease.
much love and a little smile, Stephanie
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Jo- This coming Monday will be 4 weeks off of Ibrance. "Dear God" I would like to pray today if you could grant me more patience to help me, and please by all means grant it NOW" --Thanks for sharing some encouragement.
Kap- Good luck today!
Hugs Carol
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Carol, Your prayer gave me a chuckle, thanks! And I wouldn't be at all surprised if you start noticing your energy level improves soon. Hope so. I don't know if a scan before 3 months on a tx is a good idea. Seems like most tx's take at least that long to show a response and we wouldn't want you to quit the fanny pack too soon!
Tina, Had one other thought for you. Has your thyroid function been checked recently?
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