Bone Mets Thread

BevJen

When I had inquired about this to my old RO who treated me when originally diagnosed, she said that they won't use SBRT unless there is a small number of lesions. Just trying to add to the info here.

Anonymous

I was a candidate according to the RO, my problem was an insurance problem Reason for denial was that they only approve SBRT for treating an already treated area. How much sense that makes, I do not know. We didn’t try to fight it any further

My lesion was 1 cm and it was the only one currently active. I had the EBRT and the little bugger is dead.

LoveFromPhilly

All this info and discussion is SO helpful!

My MO estimates the spot is about 2cm.

It’s so weird to know this disease process is happening in our bodies and here I am baking cookies and going to exercise class!

I did have a little diarrhea just now...probably my body “processing” all the new info.

JoynerL

Philly, it is, indeed, surreal that we are able to proceed with life, all the while knowing that a problem stalks us. So glad you're making cookies and going to exercise class! We went to the BVI and chartered a boat last week. My husband and I intend to keep doing whatever we can as long as we can!

Anonymous

Yes, life goes on, even in the face of imminent threats. Thank God for science and I don’t mean that ironically 😁

JACK5IE

Philly...so sorry the PET results weren't NED, but this is a bump in the road. You got this! Prayers for you.

LoveFromPhilly

thank you my friends! Much much love to you all. Yes! Keep on keeping on.

So excited for my upcoming trip to visit my friends in Jamaica in 9 days. I will try to share some pics of the beauty!!!!!

Here's and cheers to us. We really go through it. My goodness!

Chico

So sorry Philly that your PET did not show you as Ned. I have mets to my all of myspine, ribs, sacrum, hips, shoulders etc etc. 20 sessions of radiotherapy to the whole of T spine 3.5 years ago which was no big deal and helped with the pain. Can still do everything I want to except zipwire ☹️ A trip to lovely Jamaica will give you a real lift just when you need it.

Leigh68

Philly, I'm sorry to hear that the imaging results were not what you (we) were hoping for. It does sound like the RT is a really good treatment from the ladies who chimed in.

I think living one's life as normally as possible is the best thing any of us can do. So bake away!

Frisky

Philly enjoy your vacation....BevJen has suggested Faslodex and IBrance which is likely to be the next line of TX. It’s a reasonable combo with, hopefully, similar SE towhat you’ve been experiencing so far...

BevJen

Frisky,

Good to hear from you. How are you doing? Hope you are feeling better.

Frisky

BevJen I’m honestly going through hell right now. I have couple appointments this week, hopefully I will qualify for a blood transfusion that will provide enough energy so I can stand up.

I truly don’t understand the logic of treating us to the point where hemoglobin goes very low, 7.5 yet we don’t qualify for a transfusion...it’s another one of those hard to understand quandaries about cancer tx. Acupuncture, Ashawaganda, chlorophyll have not helped in my case...I,m too far gone...my blood destroyed by the chemos....

BevJen

Frisky,

I am so sorry to hear that you are still feeling so badly. Why is it that you are not qualified for a transfusion? Is it that your hemoglobin has to go lower for that?

Best of luck with your appointments this week. I hope that someone can figure out what will work to improve your low HG and make you feel better. Good thoughts coming your way.

DivineMrsM

I had a blood transfusion nine days ago on February 24, one bag of blood. After 5 1/2 months on Verzenio and severe side effects, my onc took me off of it. My bloodwork the week prior to seeing her showed the rbc count at 9.6, so she said I was not anemic enough for a blood transfusion.

After 12 days off Verzenio my shortness of breath was worse. I went to my local ER (not the cancer center an hour away) and after they ruled out things like lung infection or blood clot, a very smart doctor said, “I'm thinking you need blood." Thank God. My red blood cell count by that time was down to 7.9. (My normal counts are 15. My body was screaming for more rbc). The doctor said my cancer diagnosis qualified me for the transfusion even though usually the counts are lower before they do a transfusion. The blood helped. I'm not 100% back to normal by any means, but there is an improvement. My rbc were not going to increase on their own.

I feel like the medical profession is failing us when it comes to prescribing the CDKs. Should they also not be advising us to take iron supplements or whatever we should be doing to keep the rbc count up? Women on the CDKs constantly complain of the SOB but oncologists don't seem to address it. There's so much emphasis on low white blood cell count which didn't seem to affect me, I never got ill while on the CDKs. But my QOL suffered because of fatigue, nausea, SOB, lightheadedness and weight loss, all which I attribute to low rbc count.

Frisky

Divine, I have been following your story and now that I have more details, it correlates with mine Last time they measured, my hemoglobin was 7.5, not low enough apparently, although I could hardly stand up. I have been advised to go to urgent care, but that scares the living daylights out of me.

Today I'm going in for a blood test which should shed some light on my predicament, but I feel I have greatly deteriorated since.

I think you did the right thing to get a transfusion at the urgent care facility, I too was told that I would be getting only a small amount, not what I needed to make me whole...

This is very scary to me...the question remains, why did my mo allowed the count to get that low. She should have stopped treatment before it turned me into an invalid...

Divine, I hope you experience a turnaround with Ashawaganda and the chlorophyll. Let us know if you manage, somehow, to get another transfusion.

BevJen, yes it's all about the numbers...

A word to the wise: don't ever let them destroy your blood to the point of no return, since they are not allowed to fix it...

Our medical system is an unmitigated disaster and I'm being treated at a major BC center.

DivineMrsM

Frisky, what are your normal rbc counts? I knew going to the ER that my SOB was caused by anemia. A look at my monthly blood work shows decreased rbc which correlated to worsening of the SOB. It was frustrating at the ER that they refused to acknowledge this effect of Verzenio until they ran extensive tests searching for another cause. Personally, I think it’s a money thing. Why get straight to the problem when patient’s insurance will pop for all these expensive tests.

I don’t think I’ll need another transfusion. After getting the blood on Monday, on Friday my bloodwork showed a 2 point increase in rbc. I’m not sure why your medical care facility doesn’t want to give you blood. A 7.5 count is considered moderate anemic and a little bit of research I’ve done online say some facilities consider that low enough for a transfusion.

Frisky

divine, I have an appointment this morning and another one on Friday to solve his problem. I've been suffering from constipation and lack of appetite which hasn't helped.

Will review past blood works and look again at the rbc levels which have been consistently high, iron levels were also good, same with B12.
I had no idea of how a human being would feel on half the hemoglobin circulating in the body, my MO should have know better and stopped treatment earlier.

Iwrite

A little more encouragement for the group...scans at 52 months show continued stability. I'd been concerned due to some back pain, but MO thinks it may be a compression fracture that's healing. I'm using the upcoming pelvic MRI trip to have lunch with my DD1 who lives near the hospital. Taking Tramadol again so I can sleep at night. (It makes me groggy which I don't like, but good sleep makes it worthwhile for now.)

Sending you all good wishes for effective treatments, good scans and hope. We all visit the dumpster fire of fear and treatments at times that lessen our QOL. It's a great comfort to have friends here who understand. AND...the sun is out, the tree branches have started budding and the stores have garden supplies on display!

BigPeaches

Hope Springs Eternal! I am ready to get my toes done and break out the flip flops Not ready for the oppresive heat and bugs though.

LoveFromPhilly

question re: tramadol- does it make anyone nauseated and if so, how do you manage this side effect? Thanks

Jaylea

Philly, I'm a newbie to Tramadol having just recently used it to control pain from a cracked sternum. I am definitely a convert. My palliative doc was pleased to prescribe it because it's a low level opioid. I never felt nauseated. I did have a little constipation but am prone to that anyway and nothing a couple of stool softeners couldn't fix.

Iwrite, great news on stability and fingers crossed for healing compression fracture.

Light101

Hi I am from a small prairie town in Saskatchewan. I was diagnosed last year in February with bone and lung mets. I was put in Ibrance and Latrozole in March and am responding well to the treatments. My last CT scan showed good results for my lungs. I am having issues with my arms and the back of my head. Where my spine goes into skull is tender. It isnt unmanageable but wondered if anyone else has this going on.

nancyartcrafts

Yes, I have similar issues with skull metastasis. Staying onboard with just the niggling pain,I can handle it. Unfortunately, Ibrance did not work for me, but Nerlynx did (for two years).

As far as arm pain, two months ago it was so bad that I could not lift my left arm enough to put on a tee shirt without groaning from pain. Finally an MRI found a spot of cancer at C4 and one at C2 that were causing disruption of the nerves to the arm. Ten treatments of radiation to the spine at that area killed off the cancer on those spots so that my arm was freed up.

Last week I went back to the radiation oncologist with similar arm problems that were very near the initial spots on the spine. I was advised that re-irradiation to the spine would cause more harm than benefit. Fortunately, the pain has subsided and my pain meds have been increased. I am taking it a day at a time and trying not to worry.

All this to say yes, I can relate to your issues.

Nancy

Light101

Thank you for your response. My first 6 months on Ibrance I had no side effects so I sometimes feel like I'm walking in the dark when I do have these issues pop up.

wallaby715

Light101: I have skull metastasis but the reports have never stated a specific location. Just last week I had what seemed like a lump at the side of my neck/base of my skull on the left side. The muscle that goes up there felt like it was a steel cable and after applying the heating pad and massaging it, it softened up and left me with a sore spot on my skull. Now I have a dull ache at the spot at the base of my skull. I'm wondering if it's the mets and not muscle related. Sometimes I have a difficult time sleeping on my left side as it makes my head ache and seems to lessen the ache if I sit upright. Strange! I'm going to have a brain MRI on the 23rd. of March so we can rule out anything going on in the actual brain.

Cindy

belll

Philly, there are anti-nausea meds that hopefully could prevent/ease your nausea. Ondansetron (Zofran) has always worked well for me. I was advised to take it a half hour before taking the Tramadol and to also take the Tramadol with food. Prochlorperazine is another anti-nausea/vomiting med but I have not used that one. Best wishes!

LoveFromPhilly

thanks Belll!

I have the Prochlorperazine and it does work well for me. I seem to get headaches from zofran and it backs me up. This is good to know for the tramadol! Sometimes I worry about being on so many pills and injections!

I went from being on no drugs to being on like 7 drugs in the last three years.

I am currently taking tamiflu now for influenza b. The NP said that if it makes me nauseous to take the Prochlorperazine

Iwrite

I haven't experienced any nausea with Tramadol. The Ibrance causes constipation and Tramadol doesn't help. The worst SE is serious grogginess in the mornings. I only take it before bed and waking up is a challenge. Still feel fuzzy after a small pot of coffee.

It's always something...

atall

Hi everyone, newbie here, I was diagnosed with triple negative in 2015, had bilateral mastectomy, chemo, was doing ok up till last Thursday, they found Mets to bone in spine, had bone scan Friday, don't know results yet, will have needle biopsy next week, that is my question, how painful is this biopsy, I told them I want to be put out for this procedure, have had too many of these procedures where they tell you just mildly discomfort, I need to hear from people who have actually had it done, I was diagnosed with pancreatic cancer seven years ago, had whipple surgery, chemo and radiation, then the triple negative, now this....any help would be greatly appreciated.....thank you.....

JACK5IE

Hi atall...I had a biopsy done on my sacrum. It wasn't painful at all. You can feel a little something but it's not pain. They give you nice sleepy drugs so it actually feels good to not feel any stress about cancer for a little bit.