I haven’t be as active anywhere lately, and there’s a lag in my reporting my results from last Friday to you all here, because I have either been in too much pain, just too busy, or not at all busy, but totally lack lustre and can’t find the interest to be able to do it. But here I am.
Besides the fact that.......Lately, I have been waking up with headaches probably 12 times a month on average, and that’s worries me because of the three Mets in my skull. Also, my left hip, where there is another one of my Mets, has been hurting so much that sometimes I drop to the ground in pain, or think I might if I don’t hold on to something, (I’ve recently bought a walking stick and a pick up stick thingy for those bad times) I am seemingly constantly in pain lately.
So. Last Friday I had my 3 monthly delayed bone X-ray and CT scan. My oncologist said the same words she’s been saying for over 2 years. “You’re stable again. Your bloods are a tiny bit low, as normal. But I’m happy for you to continue on your Ibrance again this month. So really Chris, you are still my star patient. Keep doing what you’re doing.”
I said so what about the fact that my right thumb is locking up again, my left hip is excruciating on most occasions when I first get up in the morning, and that I get thieves headaches and migraines all the time? And she just attends to all those things and talks to me about them, and says that the hip and the headaches are probably the cancer, and that all I can do is up my pain relief, or go see the pain team and talk to them about what is possible. But I don’t want to start using more oxycodone, as I’m already taking a lot of pain relief. One of them is a slow release oxycodone, called Targin. It’s still a low dose. But I want to keep it that way as long as possible.
So I just keep pushing through the pain. My little puppy, Stevie, is keeping me bending over to either pick her up or play with her, and cleaning up after her. And walking. So that’s all good. And she’s my bright ray of sunshine to wake up to every morning.
So mostly, everything is good here, and pain is the least of my worries. I would rather that, and good results, than to have more metastasising of my Mets to other areas of my body.
This is a photo of a weekend trip to Barwon Heads in Victoria, last week. You’ll notice I can still bend over. Long may this last!
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Timtam56
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It’s so nice to see your post .. and I’m sorry about the nagging constant pain that goes with this terrible diagnosis. My pain is mostly in my ribs and right hip .. and every now and then I get a sharp shooting pain into my breast. It will be two years in December . I didn’t know if I would be here. So many twists and turns and it’s so exhausting .. yet I want to live still .. such a beautiful puppy and picture .. and yes I want to be able to walk and bend as long as possible. I don’t take anything for granted.. much love you ❤️❤️ Respectfully , Patricia
Thank you Patricia. Here's to many more bends for us.🥂
Chris! So good to see you on the board!
I'm of course so sorry about the pain and, gosh, the thumb issue (!), really hoping you can find better relief for that, but am thrilled about your scan report, not to mention your designation as "star patient"! Perhaps you need a badge or t-shirt re: that!
And what a cutie-pie that Stevie is! And so nice to have a getaway and be near water (sigh! ).
I'm glad to hear your results are good, sorry about the pain, I know it can be bad and it's scary when it gets worse, but I've found that it can then ease a lot and walking and movement is easier, and I've no explanation for it. I use a stick daily, I've had two short flare ups of extreme pain and joint stiffness one where I couldn't lift my right leg and I had to use two walking sticks, thankfully it passed after 5 days. I'll have my scans next month, I was diagnosed end of August, thankful for everyone sharing their experience on here. I hope your pain eases and you continue to have great days with your little dog.
Great news! We all want to hear the words stable and let's continue on the same meds. I hope you find relief from your pain and many more walks on the beach bending over for Stevie!Glad you returned here with your update.
Hi Chris,
That's good news that you are stable, but I can understand your frustration at the headaches and other pain you are experiencing. Have you looked into complementary therapy for the pain? Maybe acupuncture, Chinese medicine or something like that? It can feel deflating to get stable results, but still be in pain. So I hope you can get a handle on that soon. By the way, if you are available on 4th December would you like to take part in a Zoom meeting? It's set for 7:00pm GMT, but I can arrange another one a couple of hours later if you like to accommodate your time zone.
Hi Sophie. Yes I have thought about complimentary medicines for the pain. But I have no one to leave Stevie with. And while she’s so little I want every minute with her. My acupuncture doc is always so busy. She keeps people waiting so long that you’re in top her rooms for about 3 hours. And I know I would have to go frequently. So I will see about that when I can work out some kind of arrangement with someone to mind Stevie or when she is older. As even doing shopping and going to doctors appointments now, take me away from her too much. I want to introduce her to being alone slowly.
I don’t want you rearranging your time for the meeting for me. I’m really not great in the mornings and so even a few hours later is not so good for me. You just keep doing what you’re doing. I haven’t got the energy for much out of my day to day life right now.
I’ll just keep coming here and meet you all in this way.
I can understand not wanting to leave Stevie while she is so young. Hopefully you can gradually get her used to being left on her own, so she doesn’t end up with separation anxiety.
Meeting up on here is fine. Whatever works best for you.
Glad to hear the good news on your scan! I pray you find a remedy for the pain. I take prescription Ibuprofen 1-2x per day and CBD oil. Sometimes I apply topical Aspircream with Lidocaine to my left hip/pelvis area. As your bone Mets heal do the oncologists tell you the pain will diminish? 🙏❤️🙏
I had five rounds of radiation on my hip and it really zapped the pain in that spot. Had a little burn from it but otherwise no side effects. My recent scan showed no disease in this spot...its everywhere else but not there.
Ah! Well there goes my suggestion I was wondering why the rads for pain wasn’t suggested. So that explains it! That must be unnerving to get such sudden debilitating pain. Hopefully some cream like the others have suggested might help. Oh I long to stand on an Australian beach again!
I have monthly Xgeva shots to prevent pain and for hardening of the bones to prevent fractures.
My pinky finger locks a little but not all the time.
I physically pace myself, for example if I spend an hour racking the leaves in my backyard, I need to rest for the next 2 days to recharge my energy.
My oncologist says the same thing, I'm doing great and I am one of the few who has been on Ibrance 125mg and femora since March 2018, over 2 1/2 years.
I am blessed to have one of the least aggressive MBC HER-PR+and ER+ in my bones.
My oncologist is fantastic, we are a team and she has agreed with my suggestions 10 out of 10 times.
Since my lab work and tumor marker are great and my past scans continue to show stabilizing mets, I have gradually stretched my scans out from 3 to 4 to now 5 months apart.
This now makes my scans 2 times a year. I encouraged this to limit my body having to clean out all the chemicals I have to take before all of my scans.
My suggestion regarding headaches and frequent pain would be, make sure your well hydrated, elevate your upper back and head at night when you sleep.
Sleep on your back.
Do some neck and arm stretches during the day. Cut back on taking pain medication and look into getting Xgeva shots.
I've always taken Aleve on a at needed base for pain.
I recently pulled a bicep muscle on Oct. 16th that prevents a specific range of motion, it's on the mend and I just had my initial PT appointment yesterday.
Since it was the left bicep where my MBC was first discovered in March 2018 when I broke my left humerus bone , I was concerned the cancer to that area came back because the initial pain was severe.
(note: I never had stage 1,2, or 3 breast cancer.)
I'm allergic to pain medication, that was not an option for the pulled muscle pain.
My remedy was to avoid any moment that caused severe pain.
All this took place while 2 of my teeth needing a root canal started acting up with "tooth pain". OMG! that's intense pain.
I had an initial x-ray on Oct. 19th at the hospital as a precaution and all was fine, no cancer, no fracture, I just had to wait 2 weeks to see an orthopedic doctor for my pulled muscle.
*** I mention all this to make an important point regarding the healing Ibrance, Femora and my Xgeva shots have created.
Evident in my Nov. 7th x-ray of the same broken arm from March 2018, that never had surgery nor was it set, nor was it in a decent sling for anytime.
I wish I could figure out how to post the 2 x-rays, but what you see is the miracle healing of a new straight humerus bone and a solid white bone, compared to a broken in half bone filled with cancer that was not white.
Had I not pulled my muscle I would never have had the new x-ray to compare to the initial discovery of my MBC.
I received an email to respond to your post from HealthUnlocked.
Hope some of this long post was helpful with remedies for your pain as well as confirming your own positive results from being on Ibrance for 2 years.
That all sounds just wonderful! p.s. my cat, Finn, is magical, too...He insists on laying on my back all the time which I think heals my spinal mets...
I'm sure he is ! Unbelievable, you know what he's doing?! Finn is putting love and heat into an area of your body he is drawn to, his love definitely provides direct healing. Lots of love to you and the Master reiki healer Finn !!!! xx ps. Finn has your back
Hello Joybe.Thank you for that info. And what an amazing thing about your arm.
I don’t think it is you about posting two photos. On this site you can only post one photo at the top of a new post. (I think)
Yes I do have Xgeva shots every month.
Otherwise my many Mets would cause too much fragility in my life’s day to day happenings.
Ha yes. Lynn and Joybe. Are animals amazing for that. If I ever get on the floor to play with Stevie, she sometimes brings a toy and sits on my back too. It feels soooooooo good. You know that heat/bead blanket I bought cause of you Lynn? It feels even better than that!🤣👏🏻
I just got the results from my very first scan 3 months on Ibrance... so I guess I am a bit behind you. I too had all those things said to me... but since it was my first time, I was relieved to hear thzt the drug was working as my biggest fear was that there would be no signal and NZ govt would not pay for the drug for me to continue... and then I felt like all option would be bad... but instead she gave me good news and would have thought I would be much happier. Instead I went home not sure if I should tell my good news beyond my wider family since my pain in my hips and back is barely better. Still Like you I
am able to push through it... and like you have not wanted to up the pain meds. I just hoped that if Ibrance was going to work there would be less pain. Do some people have a few years
results that make them almost forget that they have cancer? I was diagnosed in June... still hiking but with the toll the Ibrance is taking on the bone marrow and now my hemoglobin is a bit low not sure how much longer... I guess the answer must always be do what you can.
Bettybuckets. Oh yeah! I am with you in all that. After two years now, on this treatment, I get so sick of complaining.
And I feel bad about always talking cancer cancer cancer to my family and friends cause I think they have their own issues to deal with isn’t life.
And hey! I’m still alive when the first doc who I saw about this said it was “all over red rover” for me.
So...... just hike until you cannot anymore. Or do smaller ones. You Kiwis and your tramping. I can’t imagine doing it now, but I did the “hard” (carry all your own stuff in and out) of Milford Sound walk, when I was 45 years old. I was so proud of myself.
Planning Tasmania with my daughter for Xmas. Hoping it will be cooler than Melbourne. But I won’t be walking out, that’s for sure. Sitting on rocks looking at amazing ness is what I hope will happen. With the sea at one side and my daughter at the other side of me. That’s if we don’t get another lockdown happen here in Melbourne.
Take care and keep up the good work. I think I’m the same as you. Slow growing her2 positive. Lucky!?!?
Lovely to hear back from you! So proud of you for doing the Milford the hard way with the pack! Xmas eve we start the Routeburn Track- but then cushy way with meals and hot showers and no heavy pack! Your plans for Xmas in Tasmania with your daughter sound perfect... especially if you just finished up the hard yards in Melbourne. No one in the world did it as tough as you guys and still beat it. The freedom is so fragile and pray that NZ snd aus can get a safe bubble going... or get vax soon.My cancer isn’t HER 2+ So I don’t know yet if it is slow growing or not. But glad yours is.glad to have this site an you to vent to... feel like only all ya ladies get our scary up and down adventure.
Chris, what a wonderful photo of you and your dear puppy. I'm so happy you got a good stable report yet sad that you are encountering so much pain. I hope you are able to manage and that the pain will subside and give you a break. Living with this condition can be unsettling since we can't easily "see" what's going on and have to rely on gut and intuition and our own body knowledge. Blessings and joy to you and your puppy!
Lovely coastal pic and great that Stevie is keeping you busy ! ...and lots of unconditional love ! I’m glad your scan came back as stable but hope you can manage the pain and headaches ...remember to keep drinking lots of water ! Take care and enjoy your lockdown free living ! x
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Scan results after 11 months of Fulvestrant and Ibrance-75
Results of first 3 month scan.
CT scan update after 6 months on Ibrance
Recent scan concerning
