I hope this message finds everyone well and we all have some positive news during these holidays coming up❤️🙏🏻
my mom has had radiation on her T4 which gave her great relief almost immediately and to her pubic bone.
However, now that she is doing radiation to her sacrum, him and femur she started feeling better after a couple treatments and then worse…. She just had her 10th (last one) yesterday and she says it’s almost like she didn’t do any radiation.
I feel like crying. I feel like I’m in total despair and she will never walk without a walker again. It’s hard watching her this way. She hasn’t driven her car in months and I can just see how down she has been.
Can anyone help me out with some insight or similar experiences?
She is about to start trodelvy Thursday before Christmas as well.
Thank you guys… I admire all of you 🙏🏻
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Maraki
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I’m sorry to hear about your mum’s experience Maraki.
I had radiation therapy back in 2015 but I can’t remember much about. I had radiation to T7 and my right hip. I get twinges sometimes but I’ve just been out gardening and moving concrete pavers and pot plants around. I’m tired and hot because it’s a very hot summer here but I’m not in pain.
Sorry I can’t be of much use but I did want to comment about Trodelvy. A friend on another site was reluctant to try it but she did decide to give it a go and she’s having an excellent experience. Side effects disappear very quickly and don’t return and she’s entirely pain free. So she’s living her best life since starting the drug. Someone posted similar stuff on this site a couple of days ago.
Trodelvy may be the answer to your mum’s current problems. Of course, it may not be too but that’s not likely as it’s trialled really well and anecdotal evidence backs up the trial data.
Was this radiation like cyberknife? If so, the radiation oncologist told me it takes one or two months for the lesion to fully respond. It takes a while for the radiation to do its work. So perhaps the pain is from the inflammation caused by the radiation's action? Have you asked the radiation oncologist if this much pain is expected?
I do hope that Trodelvy is effective for your mom. I also just read that Astra-Zeneca is coming out with a drug similar to Trodelvy. So a lot of hope with many new drugs.
I think it was SBRT? everyday for 10 days. Excluding the weekends. She just ended Wednesday.
I’m hoping the pain is from inflammation.
I hope trodelvy is the drug for her because the reason she is in this situation with the pain is because she has been on 2 drugs six months each that’s haven’t worked.
I asked the radiologist and he said give it a little
More time and some hope… and that’s it. Wasn’t helpful at all. I’m not a fan of him.
It's great that your mom had quick relief in some areas - its also unusual. It can take up to 6 months to feel the effect after this kind of radiation. I had this treatment when first treated for mets in the bone - the pain became less and more tolerable, I walked better. I also have arthritis so now you factor in the weather, arthritis, inflammation, damage done to the bones from cancer and healing that can add more bone to areas well that's the recipe for chronic pain and severe pain at times. Your mum should get more relief with the passage of a bit more time.
I can't tell you exactly, it was more gradual, a matter of months. Everyone is different, we all have to figure out how to live with this. Things that helped me seem simple now but it was quite the learning curve. It helps me to know everything changes, pain isn't constant - I tell myself I might have pain but suffering is a choice. I don't like the side effects of meds but I take a pain pill if I need to. It is sort of a full time job figuring out what helps. I went to a support group a couple of times, I've listened to talks on pain, breathing exercises, I color, journal, sew, pray, meditate, read spiritual stuff, stuff about dying/end of life decisions, read fiction, spend time with grandkids, appreciate family . . . I've probably had a lot more time 'in' this than your mom (6.5 years) I thought I was going to die in 6 months and here I am. If your mom and you can somehow get hold of the belief that whatever happens she and you will have Enough time, that there will be at least as many good days as bad that yes there is grieving and losses . . . It's the human condition.
I hope I haven't depressed you. It can be so scary and overwhelming - again, it sounds too simple and trite but it's just true: we can't get around it we go thru it and have to figure out how to not judge ourselves or our feelings.
Oh, and humor, especially at the beginning and when there's progression - humor, finding the funny in ways you never did before is a great tension reliever just fun.
Take care, know your the daughter your mom needs and is lucky to have. Mary 🌺
oh you’ve read this in the other posts…it does take a while sometimes, especially if it’s not the first radiation. I just had two lesions on my sacrum radiated ( and on the L5), 10 treatments ending Dec 4. It was a roller coaster: better one day and worse for two days. Lucky for me the treatments had a few days break because of thanksgiving holiday …today I still have pain. The radiation had inflamed the SI joint so things are sore. The muscles throughout my backside are affected…I still rely on my cocktail of pain relievers but when I can, I stretch and walk. And it IS getting better. My radiation doctor reminded me it could take weeks though I should be much better within two weeks.
So do take it easy, use pain killers and NSAIDS , use heat and massage to help with stiffness…but don’t give up. A great outcome of this treatment is that my tumor markers took a nosedive. Every little victory counts🥳
Have faith…this treatment works …but you must understand that radiation to bone interrupts the marrow process (blood numbers will be low) and it affects the supporting muscles and tendons…lot of impact from which your mom must recover. Hugs to you all and best wishes for a good and effective recovery.🙏🙌🙌❤️🩹
I must say I admire you too! I have long said it might be harder to be the caregiver than just doing this journey.
I am coming up on 10 years now, many different drugs from hormone inhibitors to targeted to chemo; 6 surgeries and 5 different radiation treatments, including my ribs twice. The list goes on…
When radiation has been a shot or two relief seems to come quicker,. When I had my T12 done it was daily over 4 weeks, that was also a surgery site. The relief was slower.
As others have said don’t be afraid to rely on pain relieving medications. It is important to minimize the pain to promote healing. Your mom will not heal well if she is in distress, take pain medication before the pain is strong…at the regularly prescribed intervals, don’t skip. When your mom’s mobility returns she will be able to start cutting back.
It also helps if you are applying cream to minimize burning that you lightly massage the area and surrounding muscles. You can pick up some basic techniques from books or you tube.
I get a regular massage every 4 weeks. My son was 11 when I was diagnosed now he is a massage therapist student and I benefit from his skills so much!
Don’t underestimate finding someone for her to talk to, a therapist that she doesn’t have to protect their feelings or worry about worrying them. It is such a great benefit to me. My oncology department has people on staff, they are trained to help cancer patients specifically.
As hard as it is we have to choose to wake up each day and put one foot in front of the other and deal with today’s struggles. help your mom journal her journey because we forget how much we’ve gone through and how well we made it through a particularly rough patch. Reminding her of those successes will give her strength and encouragement to keep on keeping on.
I have printed “posters” everywhere offering encouragement. It helps ward off my pity parties, not to say they don’t have a place once in a while.
Find miracles in the everyday, like a treasure hunt!
Hugs to you both ! Remember you are braver than you think and stronger than you know!
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