Happy New Year everyone. I'm frightened and need to hear from calmer voices. In early December I had stereotactic radiation therapy on 4 spots on my spine/sacrum. The following weekend I had some intense pain flairs but it eased up after a week or so.
The following week I began having a lot of fatigue which has only worsened. I have had that difficulty with Ibrance/Exemestane in the past, but it passes in a few days. This has lingered. Last Monday the 23rd, I had my monthly Zometa and the Ibrance cycle ended on the 26th. Now I have a vague ache and tiredness in my lower back and hips along with the fatigue. The ache is worse than it was when the first progression in November was discovered.
Does anyone have experience with this scenario? Could it be the Zometa acting on the radiated lesions? I'm terrified it's further progression. Scan not scheduled until February and apparently the onc nurse didn't request tumor markers from last blood draw. I'm in the dark.
Thank you for any insight.
Andi
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Arisgram
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Today is busy with NYE so you may not receive replies right away. Please don’t read anything into that and add that as a stressor. I don’t have your specific experience but have you considered that the fatigue from holiday activities is contributing to your feelings? We some times tend to be “Vikings” and push through when really we should be taking a break and a nap! If you don’t notice an improvement by the end of the week, call your doctor first thing Monday rather than wait for February’s scan. Please, don’t be a turbo Viking and think you should not “bother” your doctor. Perhaps your doctor can even prescribe some pain relief. Hang in there.
Thank you for replying. I certainly understand about the holiday. Part of posting was talking it through with myself.
I am all alone, so no big holiday for me. Actually, it's quieter than ever around here. If whatever this is doesn't resolve by the 2nd, I'll give my onc a call. Thank you again for taking the time to reply.
Hi Andi,
I can understand your concerns. Any pain can quickly become a cause for alarm. I had a single high dose of radiotherapy in August 2018 and I was in a lot of pain afterwards, so this may be what has happened to you.
I also enquired about stereotactic radiotherapy recently (it was recommended) and the doctor who suggested it said that it can cause a flair up of pain afterwards. Like you, I had my zometa infusion soon after the radiotherapy and I felt awful. I was in so much pain from the radiotherapy that I couldn't even sit comfortably for my infusion. A doctor was pulled from off the ward to come and examine me. He said if the pain carried on for much longer then he would consider giving me a muscle relaxant. I could have done with something at the time, but he wouldn't give me any painkillers! I didn't know what else to do so I consulted one of my clients, who is a nurse. I wasn't sure about asking her for medical advice, but she didn't mind. I listened to what she said and took paracetamol and ibuprofen and after five days I was fine. Can you call your oncologist or oncology nurses today? If not, I would take some painkillers for now and hopefully you can get some help later this week.
Thank you Sophie. I had the terrible pain flair the first week and it seemed to settle. It was over 3 weeks between the radiation and Zometa and a week after the Zometa for this "event." I'm just hoping maybe the Zometa acting on the radiated lesions is causing this ache. The scariest thing is the center of the pain is not the same place as the radiated lesions. Anyway, sorry to babble on. Thank you for your help. I'm relieved to know someone else experienced after effects of the radiation treatment. The radiation onc made it seem like nothing to it!!
You're welcome. I hope you are right and it's the zometa working on the lesions and no new issues to worry about. The pain can appear in other parts of the body. I had pain in both legs even though it was my spine that was radiated, so that may be why your pain is elsewhere.
You are not babbling on. It can help to know others understand what you are going through. As for the oncologist you mentioned, it's easy for them to say there's nothing to it if they have never had it done! A bit like when I had an endometrial biopsy and the gynaecologist said it would feel a bit like a cervical screening test. But it was the most painful experience I have ever been through! I would find it more helpful to be prepared for any possible pain so that I can have painkillers at the ready if needed.
I hope you are feeling better today.
Sophie
P.S. Would you recommend stereotactic radiotherapy? Are you glad you had it done? I want to have it done too, but I am not sure if my oncologist will be on board when I mention it. It's offered on the NHS at one of my local hospitals, so I am hoping she gives me the go ahead and puts in a referral for me to have it done.
Yes, absolutely I would. I just wish I had realized the side effects. One patient at my clinic was diagnosed with bone mets just after her baby was born. Letrazole was prescribed, and she quickly had a great response. However, a couple of lesions showed up a few months in. As my onc says, "We zapped them, and she's been clear for 8 years!" So, yes, I would recommend it. I'm hoping to have as good an outcome as she did!
The process itself was fascinating. The procedure was completely painless. The 24-72 hours later was NOT FUN AT ALL! Now, I have been tired for almost a month, but if it rides me of 4 lesions, I'm all for it! Best of luck if you choose to do it!
A
P.S. I almost punched my gynecologist in the face during my biopsy! Little pinch my ass!!
Thanks! It sounds like I will have the same side effects from the stereotactic radiotherapy as the palliative kind I had. I thought perhaps it would be different, but maybe not. I am willing to go through it again though if it can zap the two spots on my spine. That's encouraging to hear about your friend and I hope your lesions are zapped. I hope the same can happen to me too. Like you, I want to buy more time and hopefully get to the point where a cure is on the horizon.
I explained to my husband that having radiotherapy is a painless procedure itself. It just feels like you are in a giant microwave. Then the pain starts afterwards.
I'm sorry your gynaecologist was insensitive to you. Unless they have been through the same procedures that they administer to their patients they cannot know what the biopsies are really like. More like being stabbed than a "little pinch", don't you think?
Absolutely! Stabbed...and then they twist the knife. My plastic surgeon who operated on me more than 25 times had never had surgery! He used to say, "Won't hurt much." Geez
Love the microwave analogy. I am apparently still cooking! Please let us know if you go through with the SRT. Pretty amazing technology for sure.
I don't think surgeons or any other people should say that a certain procedure, operation or treatment will not hurt when there is a strong possibility that it will! That is misleading and can catch us off guard.
I am not seeing my oncologist again until the end of February, so shall mention that I want stereotactic radiotherapy then. I am hoping she will approve it and put in a referral for me.
Sophie
Radiation can cause a flare up or pain and also fatigue. I had radiation Friday and I’m totally exhausted and nauseous 😞
I'm sorry you're feeling crappy. That's no way to spend New Year's Eve.
• in reply to
Sorry to hear that. How are you feeling today? I hope the pain and nausea will soon pass. I was so naive at one point and thought that radiotherapy was an "easy" treatment that would not have any nasty side effects.
Take care,
Sophie
• in reply to
The pain has gone but the nausea is kicking my butt even with meds. I can feel the burn spot half way down my esophagus and that isn’t any fun. Better than the burns to my mouth last time.
• in reply to
I'm sorry to hear that. My integrative doctor recommended a teaspoon of slippery elm mixed into a glass of water to help with nausea. I hope you feel better soon.
I had SABR radiotherapy to my liver...obviously not the same as you but I suffered awful fatigue afterwards for quite a while...I was on Ibrance and letrazole at the time...I live on painkillers and it’s not nice...pains from my bone mets
I start them today with some trepidation....I’m making myself think it’s a good not bad start to the year and trust that the new meds will stop progression
Yes I rode Bugsy quite a lot last week as one of my girls is a teacher and has a few weeks off...I always feel safer riding in company in case I come off....there’s been a few incidents lately in the woods where we ride...some viscous dog attacks ...one poor lady’s poodle was killed a few days ago...these dogs are big mastiffs and should be muzzled or on leads as there are lots of horse/bike riders and kids and walkers this time of year...one of my friends came off his horse twice last week due to dogs flying out from nowhere and startling his horse and he’s an experienced rider like we are
I’m rambling on here...you only asked me if I’d been riding!!!!
I'm glad you managed to get out on Bugsy recently, but so sorry to hear about the dog attacks. That's terrible. I hope the dog owners can be found and prosecuted for the attacks. They should not get away with it. You should feel safe while out horseriding, not looking over your shoulder or afraid in case dogs come running out and startling the horses.
The woodland where we ride is beautiful but not that far from a rough estate and occasionally these people are around...sound a snob don’t I ?
Spoils it for everyone else...I usually carry a whip so if anyone threatens me I can defend myself...Bugsy is a big horse so I feel safe as non horsey people would think twice about approaching him
I am sure this is all down to the side effects of the radiation.
I had pain flares and fatigue for some time after radiotherapy to my lower back. I was advised this would happen but nevertheless, like you, i wondered if it was the cancer getting worse.
We tend to be over vigilant. Sometimes a good thing but not always.
As for tumour markers ... they are not reliable. If by any chance the pain doesnt subside ask for an Mri on your spine.
Thank you. Both my rad onc and my med onc are very "It's no big deal" kind of guys. They believe in minimizing side effects, so I just wasn't prepared I think. I'll know better next time! Thank you!
Spoke to my son a doctor. All oncologists deal with the BIG picture but when comes to the side effects not their problem so to speak or pass it on, or not so bad ,right? I spoke to family physician who actually offered yo try to help with different complaints, and added it's very individual.
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So only if you want,and how u want me to be involved...really appreciated that. I trust alternative medicine more ,like acupuncture,acupressure,herbs etc. I am trying a homeopath that is willing to treat with conventional medicine and is an expert in oncology.
I wish I could give you insight on this but I can't. I have some progression myself, will be looking into other treatment. I have anxiety like crazy every time I have am mri or pet scan. Talking about it with someone with a listening ear (no advise), taking short walks or anything that is a little physical (know it's hard when tired), listening to something that is relaxing (I do this a few minutes every day); about anything that helps you to feel that you are releasing your pent up feelings. We are on a stressful journey, it's normal to feel afraid. I would make sure that your doctor knows about the aches, pains, tiredness. This is a very nice site because we are here to support each other. Never lose hope. Hang in there, sending a virtual hug.
It is a great site! I feel like I'm just whining when I try to tell my friends what's going on. They usually respond with, "I'm sorry, but you look great!" I truly understand they don't know what to say. Thank you for your wonderful advice. I'm going to watch music videos with my dogs today while I sit on a heating pad!!
Somehow my phone ate my middle paragraph. Let me try again:
I hate to hear of your progression and medication change. Do you know what treatment you will be moving on to? How are you feeling about everything? I hope the new course is successful and free from nasty side effects.
Thank you for asking about if I know what the next step will be. I don't really know what the next step will be, I am on my third kind of treatment (piqray, fasodex, zeneda). It makes me nervous not knowing, doc said she will discuss options on January 7. I did email her about two possible New treatments, I'll see what she thinks. Meanwhile I do know she wants some radiation done on my left femur leg bone, to slow/stop the cancer spots. There is a concern it could cause a fracture. I will post here when I know the next step.
Not sure about the meds but i have had stereotactic rads on t5 t11 and was so fatigued i literally could do nothing but sit on a couch for over a month. I hope you get answers, can you cl your onco tomorrow??
Oh thank you! I had 4 lesions and really thought I would just hop off the table as if I'd had an x-ray. Just silly of me. I'm glad to know I'm not being histrionic. I sometimes feel that way.
Thank you again, and I hope 2020 is a happy....and stable...year for you!
Thank you so much Sandra. I hate being so anxious AND pessimistic. I'm going to chalk this up to the combo of rads, Zometa and Ibrance. I'll know in February if it's anything worse, but since I have no numbness or tingling, I will try to put it out of my head until then. Thank you!
Try thinking positively...radiation causes fatigue..I tried ignoring it, but it's real. So many weird aches and pains from medications....its part of the process. Try to replace the thought, the fear and when it hurts say, think ....this is the healing. With help from Above surely will be..... Radiation is very effective!
Don't fight the thought ,exchange it with a good one,helps..
That's a great idea! I'm going to do that. I actually remember having some significant pain after starting ibrance and exemestane. I even called my oncologist about it. He said it was simply the medication acting upon the lesions. A month a few months later, I had a clear scan! I just need to do as you say and remind myself, this is the feeling of healing.
A happy and stable New Year to you. Thank you for your response.
Just taken the first dose an hour ago ☹️ I’ve lounged about most of today...went to see Bugsy this morning but didn’t ride...washed his muddy tail and legs...what a state !! and I got filthy and wet but he’s all spruced..till he rolls in the mud again lol
Yes I’ll just go with the flow and try and not dwell on thinking about side effects
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