Update: post-radiation and New meds

[Dragonfly2]

Hello Friends and warriors! Dragonfly is updating the latestest treatment... Radiation to the sacrum and L5 (10 treatments) ended on Dec 4th but since then I've had a rollercoaster of side effects...mostly stiffness and muscle spasms that catch me unawares when I get up or sit down. I truly thought it would be a steady improvement but instead it's everything they have ever said about radiation...fatigue, pain, stomach discomfort. I find that walking is easy to do in the moment but the next day everything hurts ..so i know I should not over do it.

When i finally looked at my blood results I saw extremely low red blood and platelet numbers, low protein ..which explains why I feel so low. Oh yes, I have pretty much avoided any alcohol during this time because of its effect on the radiated marrow. (well, I did have a glass when celebrating..)

I have enjoyed an interval of no chemo meds while undergoing radiation and this washout period is actually getting me ready for the next step in meds...In my previous post I had written that I was choosing Xeloda because I feared the fulvestrant shots and blood sugar impact from Piqray. Quite frankly, my oncologist had suggested Piqray because it was the recommended med for the PIK3CA mutation I have...after a few weeks of mulling it over, i talked it over again with the ONC and she really recommended I should try this second line med Piqray before leapfrogging to the XELODA.

So here I am...waiting for the NEW YEAR to get on my new meds...in the meantime my tumor markers had plunged because of the radiation (yay) and I can enjoy the holidays without worrying about unexpected side effects.

I'm also waiting to see if Piqray will be fully covered by my insurance...which had covered Ibrance in the past...but one never knows. Either way, the ONC said there was payment assistance,,,but that's a whole other discussion.

What I wanted to share from these experiences is that changing meds and treatments is very stressful and frightening and while there is always a sense of extreme urgency to kill those cancer cells. the decisions really need to be made mindfully with plenty of time to process.

I must thank all the women who have written about their experiences when I asked for help to make the decision ... because I realized that whatever one has to endure in the process...well, it IS endurable and ultimately may be the best choice for you. (TimTam, Im thinking of you!) Ladies, you have been so instrumental in getting us all to where we are, for better or for worse! Such an army of support, advice, pep talk, and comfort is part of the improved survival rate for this disease..because it's so lonely to find yourself the only one with cancer in your social group...Those who have not been touched by this, really have NO IDEA. But everyone here does and can extend a hand of comfort and support. So thank you dearly...and best wishes to all who are seeking relief and advice in making such important decisions.

BTW, I wanted to share that I am now including Trazadone in my search for a good night's sleep especially during this stressful and uncertain time. A half tab at night helps me enjoy 8 hours of restorative sleep... and hopefully prevents my restlessness from disturbing my dear husband.

Best wishes, Happy Holidays, Happy Hanukkah, and Merry Christmas.

[hopenowandtomorrow]

Dear Dragonfly2: Thank you for the update & holiday wishes! I pray this new treatment gives you many more years of giving a quality life!

Merry Christmas!

🙏❤️🙏

[LibraryGeek]

Hi Dragonfly,

Sounds like you are on a good path and hopefully the radiation effects will improve very soon. I think Piquray is a good choice and you won’t find the Fulvestrant shots as bad as you think- they didn’t bother me at all, but you can find good advice here if you search. I have the PIK3 mutation but my oncologist put me on Paclitaxel instead as she wasn’t sure I would be able to have Fulvestrant after already being on a trial where it was combined with Ibrance (I am in the UK), and it did failed after 6 months. It looks like I am now resistant to endocrine treatments. I hope in the future another version or combination of Piqray might be an option for me. There is a good Facebook group for Piqray/PIK3 and though it doesn’t work for everybody there are some great success stories there too. Hope it is good for you- do keep us all posted, and the best of luck!

Jackie x

[Hopeful4Cure]

Well written dear. We all indeed go through so much that people who are free from this really do not have a clue. Interesting that the rads lowered your markers. Hope it continues and you do well on your new meds. I too did not have any issues with fasoldex shots. Just make sure that it is at room temp and the nurse takes her time -allowing at least 2 mins slowly for each shot. Otherwise you will have a bump. Blessings and Happy Holidays

[Kdiet]

So beautifully said. Thank you. Xx

[love2golfwell]

Dear Dragonfly2, I'm glad you are finished with the radiation treatments and hope that soon you will be feeling relief from them and no more pain and discomfort. I know you did a lot of soul searching and asking for advice before making the decision about your new meds. I hope and pray that they will work very well for you and not cause undue side effects. I am happy you found something to give you a good night's sleep. I have been using a children's dose of melatonin for sleep and that has helped me quite a bit. I am glad you found the support you need on this site. I, too, have found this site so helpful. It is comforting to know that we are not alone in this fight. Please know that you are always in my thoughts and prayers. Sending you hugs and prayers. Enjoy the Christmas holidays and may the New Year bring you better health, peace, comfort and joy.

[Totheriver]

Wishing you all the best on your new meds and wishing you and your family a Blessed Christmas and 2024💕

[mariootsi]

Well said! Sending prayers and hugs and holiday greetings. Thank God we are here for each other.

[ClarenceO]

Thank you for your post Dragonfly. Well said. As you, I was terrified of the fulvestrant shots and searched for clinical trials using pills to avoid the shots. I finally bit the bullet and decided to proceed with the 2 shots each month plus Piqray. I find it easier to get both shots at the same time and ask the nurses to talk to me while injecting to distract me. Massaging the injection site immediately helps reduce the bumps as well as a heating pad for a couple of hours. For Piqray Novartis has a patient assist Dpt that is great. If you apply and qualify, the meds are free. They send it via mail. Wishing you the best.

Suzanne

[13plus]

You’re absolutely right about the fear and anxiety that happens with a change in therapy. I went through this last December, and then July this year, and now it’s looking like I will need to change again with the new year.

I’m interested to know where in your leg you felt the pain that led to you getting the radiation. I’ve been having what I call “pain episodes” sporadically and they’ve been getting gradually worse in that they last a longer period of days now. I get the pain in my right groin area but it’s vertically, and down into my inner thigh. It feels like muscle pain but I think it has to be from pelvis or lumbar spine. I’ve got a lumbar spine MRI and torso CT (to check my liver lesions) already booked. Waiting to get the hip X-rays booked too. The doc wants to check the vulnerability of my pelvis I fear I may be heading for radiation too

[Dragonfly2 in reply to 13plus]

Ahh, my dear, this is not my first rodeo.😩 The pain you describe was what led to my diagnosis in June 2020...I had a tumor on my illiac crest which gave me that terrible grinding, burning pain and a mystery limp. Radiation, zometa and Ibrance got that all under control. This current summer pain was around my sacrum and seemed to affect the SI joints on both sides...yup, two lesions there and one on the L5. Im still struggling with the post radiation pain...the beam destroys bone marrow and affects red blood cells, muscle tissue,etc. But I also have identified a recurrent pain on the original illiac site...so I may have to return for my peas please. I still have the nerve pain radiating down my leg when I stand up after sitting...Im going to try PT to see if it's the fault of my scoliosis which is crushing a nerve as it compresses the vertebrae. ..sigh... But Piqray and fulvestrant is waiting for me on Jan 24...so much to look forward to!

But, look, getting this checked out is crucial to getting yourself on the road to better things. Not knowing will not help for sure...and while radiation itself is pretty benign, it's a very powerful tool. Radiation to the illiac crest does not impact so much the bowel, muscles, etc as my recent treatment. It will help..I had felt relief before it even was finished. Best of luck..you will find it's not terrible at all. Just be kind to yourself and take good care.