Break from Letrozole for 2 1/2 months
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Sonya, I hope the lumbar MRI can find the cause of your current problems. Don’t beat yourself up about the letrozole. It reduces the chance of recurrence but doesn’t prevent it. Hopefully you’ll have a better new year.
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Hi Maggie,
yes I am anxious to have the mri done. I am very worried about spinal cancer, however. In addition to my other symptoms I’ve had terrible rectal pain and burning for about a month and a half now that never subsides and I just read that that’s a common symptom involving cancer with the lower spine. There doesn’t seem to be any other reason for my rectal pain as I’ve been to a colorectal surgeon, and I also went to my GYN. The symptoms all fit a little too perfectly pointing to spinal cancer.
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Hi Sonya,
Your symptoms do sound like spinal compression but that can have a variety of causes. I had problems with it during both my pregnancies because I have scoliosis in my spine. They also found Tarlov cysts which have spinal fluid in them at the base of my spine. So far I haven't had a permanent problem even though my spine CT report reads like a medical paper. Cancer is just one possibility. Arthritis, degenerative changes and a whole host of other things can have the same symptoms. It's not always a straightforward thing to deal with but fluid removal, PT and surgery are some of the treatments.
Let us know when you get the results. I naively thought that breast cancer was straightforward but there are so many twists and turns associated with it and its treatment. Now I have unexplained high WBC counts and hip pain that isn't that bad but keeps waking me up at night. My MO is sending me to a hip ortho and my PCP is doing more blood tests. I think it's probably lack of sleep but who knows. Try not to worry too much. Hugs and Happy Holidays!
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thanks Maggie. I’ve just got more and more concerned because the pain doesn’t get any better. It just gets worse and the burning and pain in the rectum is crazy awful. Then when the back pain started to add to it, I got concerned. That’s true. I know it could be degenerative disease, which I know I had but just throwing in the breast cancer card makes everything scary. I just wish I could get this MRI done and get the results ASAP. I want to know, but I don’t want to know if you know what I mean.
I wonder why your white blood count is high? Did you have an infection of any kind or have you been under a lot of stress? And I feel for you with the hip pain. I do have a bad arthritic right hip that I received the Cortizone shot for early November. Funny thing is the rectal pain started hours after the shot and has never subsided. But that may not have any relation at all.Lack of sleep can also do some crazy things to your body. I know that.
I try not to worry, but I’ve been a worrier since I was a kid. Someone once told me that only creative, intelligent people are worriers. Obviously they were trying to make me feel better LOL.
Let me know how you make out with the hip ortho and the additional blood tests.
Hugs and Happy Holidays to you too!!0 -
Sonya, I wonder if the cortisone needle hit a nerve or caused swelling in the area? Just a thought. I have no infections or allergies but lack of sleep can’t be good.
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Maggie,
I was wondering the same thing about the cortisone shot because that rectal pain literally started 3 hours later. I did tell the radiologist who gave me the shot and I know he was concerned. I did tell the orthopedist about it and she may also want to do a pelvic mri but the lumbar first because of the cancer spread concern.Lack of sleep does affect your immune system I think. Are you just having difficulty falling asleep or staying asleep? Does the hip pain keep you from sleeping?
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I was able to sleep on my left side until August. Now there's pain on both right and left sides as well as both sciatic notches (back) when I lie down or sit for too long. It's tolerable when I'm moving about and I can walk OK. I take gabapentin which helps me fall asleep (no NSAIDS allowed) but I wake up after a couple of hours. So much shows up on the hip MRI (arthritis, tendinopathy, ligament and cartilege tears, osteoporosis, an indeterminate bone tumor) that nobody knows where to start. I guess this ortho is supposed to weigh in on replacing the left hip since that way the tumor can be removed and biopsied. It all seems a bit extreme to me but he might as well add his opinion to the mix.
A pelvic MRI might be a good idea for you if the lumbar MRI doesn't find the problem.
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I have the same issue with my right hip which does have severe arthritis. I cannot sleep on that hip and in the night the pain war and it is difficult to get back to sleep. That is why I opted for the shot but cannot have another one. I will need hip replacement surgery. I did go to pt which helped a little but not much. I know how this can cause a sleep issue.
At first we thought the pain in my back was actually from my hip but it wouldn’t be causing increasing pain down both legs, and other symptoms, therefore the lumbar mri request. I agree with you that a pelvic mri should be done as well. I know the ortho is concerned about the shot’s effects, if any, in that area and that is why she thinks it might be a good idea to have that done.
Do you have any plans for hip surgery? I will do it maybe in the spring but I want to make sure that there is nothing else going on now.
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This all started out with right hip pain on pressure for which my local ortho sent me to PT with a diagnosis of iliopsoas tendonitis. PT made things much worse resulting in an MRI showing all kinds of ortho problems including an iliopsoas partial tear and a bone lesion in my left hip socket. That can't be biopsied since there is a >70% chance of breaking my hip. It didn't light up on a FES pet scan and it's pretty much the same size as it was nine months ago so I'm happy to have it monitored. The ortho onc isn't as optimistic as my MO saying it can be problematic even if it isn't ER+ and he's never seen a benign bone tumor in that location in anyone over 40. I'm all right if I don't have to lie down or sit for too long but a WBC over 20,000 when I was having my anemia checked inspired the team to have a hip surgeon weigh in.
I'm sorry you are in such pain. Hopefully you'll get a non-cancer diagnosis and they'll be able to do something.
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I know that I have severe arthritis in my right hip and I also can’t sit too long, and I cannot lie on that side at all. And now with my back pain and the nerve pain down my legs I’m having a lot of issues getting comfortable. If there’s a great of a chance of breaking your hip, then I certainly see the sense and just monitoring the lesion. That’s good if it hasn’t changed. And if it didn’t light up on the scan. Can’t a lesion not be cancerous.?
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From the statistics it has a 5% chance of not being cancer, it looks like a met to the bone tumor radiologists, it didn’t take up estrogen and has stayed at 2.5 cm so who knows. I don’t want to risk breaking my hip. The ortho onc disagreed with the type of pet scan the MO did (just testing for estrogen receptors) but he wasn’t consulted until afterwards. I’m hoping the hip ortho has ideas for helping me sleep but I’m surviving on a couple of hours a night.
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just a couple of hours a night will do number on how you feel for sure. I usually get iabout four hours of sleep and I’m kind of in and out for another hour and then just get up. Thank goodness I’m retired. Maybe the hip ortho can do something for you. Are you allowed to get hip injections?
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No, injections make tendinopathy worse. They work really well in my knees which are just affected by arthritis. I was disappointed that cortisone which works magically in my knees and lasts close to a year couldn’t be used in my hips. Are you not allowed to get another injection in your hip?
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no, this was the second one. I had one in April that helped a lot. I was allowed one more but evidently can’t have more because the cortisone does something detrimental to the cartilage that makes it more difficult to replace the hip. But this second shot has only given me grief anyway. I read something somewhere about cortisone shots not always being good for cancer patients. Suppressing the immune system I believe but there may be more to it, I haven’t researched it fully.
That’s too bad you can’t get the injection in your hip though. There’s nothing that they can do to help it?
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Cortisone shots help arthritic joints and bursitis but degrade tendons, cartilage and increase osteoporosis so that's why they are out in this location. Hopefully the hip ortho will know what can be done since he deals with the entire area.
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I would think he would be able to help you. When do you see him next?
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I see him for the first time the third week in January. I'll sleep walk till then, lol.
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LOL. It stinks we have to wait so long for these appointments. And I’m in a area where that shouldn’t be an issue.
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I wonder if that cortisone shot did something to my back or pelvic area. I got the pressure in my rectum 3 hours after the shot and it’s been downhill ever since.
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I don't mind waiting since someone with a broken hip needs him sooner. This doctor works with the ortho onc when hip surgery is involved so he can probably provide better advice than just any hip ortho.
I hope your MRI went well. If that doesn't provide answers you might want to follow up with the area of the cortisone shot since the symptoms started soon afterwards. What is good for one part of the musculoskelatal system can be harmful for the rest of it.
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yes I agree that the hip ortho that works with the ortho onc is much better to see about the problem.
MRI was quick, no contrast. But my back is really killing me now after laying down on the hard surface. Even though there was a pillow under my knees the pressure on my lower back was painful.
I also agree with your suggestion about a pelvic mri or cat scan. I know the ortho was thinking that should be done too. Considering I’m getting issues with the pelvic area feeling like everything is dropping.0 -
So I’ve been a very bad girl again according to my oncologists office. I tried to go back on the letrozole in January after being off it for several months and only lasted a few weeks because my blood pressure skyrocketed again. I started having palpitations again and rapid heartbeats. Of course there’s always the fatigue and insomnia. So without talking to them about I stopped it again after 3 weeks. like I’ve said in previous posts I knew where that conversation would go and and it wouldn’t really be a discussion. It would just be a lecture. But I talked to them today and I’m going try going back on it again. Of course I did get yelled at. I felt like a kid in the principal’s office lol. I do realize I should not have just stopped it without telling them and I also realize that I was taking a huge gamble in stopping it.
Anyway, as I also mentioned in my previous posts, the problem is by not taking it I see-saw back-and-forth with worry about the cancer returning because of my decision.the past three weeks I’ve been having really bad bowel issues in that I just can’t seem to go. I’ve been trying MiraLAX, milk of magnesia, probiotics, prunes, fiber, etc I spoke to my G.I. late last week and he wants to do another colonoscopy even though I had one done in November 2023. I reminded him that I had a cat scan of my abdomen and pelvis late January of this year and he said that wouldn’t tell him what’s going on. So now, of course I have the anxiety of whether or not I have colon cancer. My stools have been getting smaller and more narrow for the past three weeks to where I’m practically passing nothing at all. I do have internal and external hemorrhoids that are inflamed which I was concerned was blocking the passage of stools, but they tell me that they wouldn’t. So I’m thinking of getting the big guns out and taking some Ducolax tonight. TMI I know.
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Hi Sonya, It seems that letrozole can cause nearly every possible side effect under the sun for you. The prep for a colonoscopy is not much fun but with your symptoms it sounds like a good idea. There may be some type of blockage other than a polyp which could be addressed during the process. The twilight anesthesia wore off during my last colonoscopy and the doctor asked if I wanted to stay awake for a tour of my colon on the way out. I was amazed at how pretty it looked on the screen with pinks, blues and purples which were the arteries and veins. I have a short area with diverticula which could be problematic so I am forewarned. I take colace and sometimes miralax to prevent the problems caused by my iron tablets. Sometimes I also have to resort to ducolax.
I went to the hip ortho who said the source of my pain was in the muscle/tendon near the trochanteric bursa. There is no bursitis on the MRI but there is severe tendinopathy, osteoporosis and mild arthritis in the area. I had an ultrasound guided cortisone shot to avoid the lesion in my hip socket. While I still have pain in the socket area the rest of the left pelvis feels much better. The ortho told me that a benign tumor can also cause pain. I'm having the same procedure done on the right hip next week.
There's never a dull moment. I had an appointment with my PCP in October about three months of fatigue, mild itching and inability to sleep more than a couple of hours. She ran a CBC to check my anemia and found an elevated white blood cell count. She repeated the CBC a month later with the same result. My appointment with her in January to discuss this was cancelled and rescheduled to the beginning of April. In the meantime my endocrinologist ran a routine CMP and my liver enzymes were sky high. She called in a favor and got another family practice doctor to see me. He thought it might be the statin I take, discontinued it, and sent me for a bunch of liver tests and an US. The enzyme levels have dropped some but are still about four times what they should be. The US found very slight fatty liver but not enough to cause those symptoms in the opinion of the NP who called me. There is something the radiologist can't identify at my gall bladder neck. I'll see my PCP as scheduled but am not hopeful about answers. I figure this is will be problem for my gastro whom I see in June.
I hope your latest GI issues get sorted out. I know you worry about recurrence without the AI but there is so much else going on. I hope things clear out and nothing concerning is found in your colon.
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Hi Maggie, it’s good to hear from you.
Its crazy how there’s always something going on, right? Resolve one thing, on to the next!!
I know my brother had similar issues on the statins and he had to discontinue them. How long between the last liver tests and stopping the statins was it? I imagine it would take time for everything to level out after being on the statins but I don’t know much about that. Do they have to do further testing re your gall bladder? That will be up to the GI?I’m glad the shot for your hip pain helped you and that you are going to do the other next week. I know that the shot helped mine initially, I had another one just last November but it wore off quickly for me because I have severe arthritis in that hip. They tell me I need hip surgery. One thing at a time!!
Which leads me into another issue that may or may not be contributing to my bowel issues. I saw a urogynecologist a couple of weeks ago because I had the feeling of pressure in the rectal and vaginal area and it is her feeling, after an exam, that I have pelvic floor dysfunction. The muscles are so tight yet weak at the same time. I’m sure I exacerbated the problem by straining on the toilet. (Which I know is not good to do) In fact I know my constipation problems got a lot worse after I strained the last time and the hemorrhoids went ballistic. They are still bothering me. Anyway TMI as they say.
I decided tonight to just go with more miralax because I know the doculax results will totally wreck havoc with the hemorrhoids. But if I have to, I’ll take the doculax tomorrow.0 -
I had been taking lovastatin for two years before the CMP so it would have been a year and a half after starting that I developed symptoms. Part of the problem is the difficulty getting a doctor’s appointment. The doctor who saw me fit me in before office hours to pay back my endo who gave up her lunch hour to see one of his patients. The NP who called seems to be at a new satellite office I’ve never been inside. My ALT of 290 and AST of 180 came down to 240 and 150 respectively in a week. A month after that it was at 210 and 140. I haven’t talked to the same person more than once. The NP questioned whether I had really quit the statin. I had symptoms for seven months with two CBCs showing elevated WBCs and nothing else done. My PCP calling in sick the day of my January appointment just pushed everything down the road. At least the liver blood tests (showing nothing) and US were done. It seems a very long time for statin induced liver injury to kick in but I haven’t been able to ask about that. This small rural hospital is the only source of medical treatment within an hour’s drive and they are overwhelmed with scheduled patients. There is a walk in clinic that deals with established patients’ acute illnesses like the flu or a broken arm but they won’t address anything else. The ER will only take emergencies. All this reminds me why I drive 100 miles each way for oncology, gastroenterology, pulmonology and surgery.
Pelvic floor dysfunction could be part of your problem. I hope the miralax does the trick.
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Sonya16 - I am so sorry for all you are going through. You are not alone in see-sawing back and forth between taking or not taking aromatase inhibitors.
I am still standing by my decision not to take AIs. Yes, the thought of the cancer returning is always in the back of my mind. But if I take AIs, I face increased bone loss, high blood pressure, high cholesterol, heart issues, increasing arthritis, worsening insomnia and more. I read a quote somewhere that says, "the person who experiences the consequences should be the one to make the decision". I'm faced with two tough choices, neither one good. But I will be the one who decides if the benefit outweighs the risks. And right now I have decided the risks outweighs the benefits.
The other factor in my decision is that studies have shown in women my age (71), that AIs may decrease the chance of reoccurrence, but not death. I was puzzled about that. I took a deeper dive and found that there were still deaths due to heart failure or other cancers. Again, I am faced with two choices, none good.
But something is going to take me eventually. I eat a VERY healthy diet, I do some form of exercise daily, and am at a healthy weight. In spite of this, I have high cholesterol. My PCP was pushing statins, but long term use of statins have adverse effects on the body. So I fired my PCP and got another. It turns out cholesterol is only one risk factor in heart disease. My new PCP did a risk assessment and I am at very low risk. If I take AIs, my risk will increase significantly.
I don't want to go in a downward spiral of taking one med, then having to take another to combat the side effects, then having to take another to combat those side effects.
We are all individuals and have to make our own decisions. I wish doctors would just lay it all out on the table. Be more honest about the benefits of a drug and the adverse effects, especially when taken long term. But they downplay the adverse effects or dismiss them entirely. Thousands of people are sickened or die every year from taking prescription drugs AS PRESCRIBED! I have to wonder how many of our health problems are caused by these drugs.
Sorry for the long ramble. These are the thoughts that run through my head. My opinions and decisions are my own and not my recommendations for others. We are all individuals and really should be treated as such. I don't like medicine's "one size fits all" approach.
Best of luck to you in your wellness journey. You are not alone. We are all fighting the same battle.
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Hi Saleen19-
It’s so good to hear from you. I agree with you 100%. I also feel that at my age, (70) that the other risks are dangerous. As I mentioned, my BP was getting higher and higher and I already have high cholesterol. I was getting the palpitations and spurts of rapid heartbeats. My father’s side of the family has a strong history of heart disease. He had his first heart attack at 42 and passed away from heart disease at 59. My grandmother had a massive heart attack and passed at the age of 60. So to take these AIs I feel is a real gamble. Of course it’s a gamble either way but I don’t want to have to address all these other issues that come up because of this drug.
I was also getting mouth sores, insomnia and terrible headaches. At age 70 you just want some quality of life.
I also agree that I don’t want to take drugs that counter the side affects of another. It’s ridiculous. And what really annoys me is that the drs office wouldn’t even have the discussion. And treat me like a child. They don’t like my questions. And they poo pooed my side effects. I researched it and the drug certainly does have the side effects I’ve gotten. Funny how it all went away when I stopped taking it.
Problem is that the healthcare industry and big pharma are so intertwined.
It’s a battle alright, isn’t it.0
