Crazy Question???

[Itisfinished]

This is probably a crazy question however I am going to ask it anyways. Has anyone in this group been able to tell when they have had progression and if so what were your symptoms?

Just curious,

Michelle

[Ardie1970]

I have wondered the same thing. I didn’t know I was sick when diagnosed de novo. I had the shingles and it led to my diagnosis🤷🏻‍♀️

[Itisfinished in reply to Ardie1970]

I knew I had bc however I didnt know I was stage 4 with extensive bone mets. I never had my breast removed. However I started hurting bad in my back and my pelvic area, my feet were going numb. So July 31st of last year my husband, son and daughter in law drove me to Chapel Hill and by August 3rd I was having spinal surgery to remove a tumor that was crushing two of my vertebraes. God has truly worked a miracle in me. I was put on Letrozole, 75 mg Ibrance, and xgeva shots. I have only had one set of scans done per starting my treatment and they were stable and cancer makers were down drastically so I am grateful. I get my second set of scans done on the 28th of this month it's been 5 months since my first ones. So I pray all is well. I was just wondering if you can tell when theres progression.

[RLN-overcomer in reply to Itisfinished]

Yessssss Sister/Warrior, and Over-comer I see a Praise report coming. 😇GOD is Awe-mazing.Amen

[Bettybuckets in reply to Ardie1970]

Great question- I have my 2 bd scan in a few days snd bracing myself because I expected to be pain free if Ibrance was working. My husband says that maybe the pain is caused by Faslodex…. The scan will tell us

[Itisfinished in reply to Bettybuckets]

I have had constant pain from my back surgery and I have to take pain meds. However I am having more pain in my back and I dont know if it's from the surgery or what. It's an awful feeling to constantly have to worry about every little pain. God help us all!

[13plus in reply to Itisfinished]

After your next scan and you know you’re ok - seek out some gentle manual physical worker. Surgery creates lots of scar tissue and anything to do with the spine needs gentle movement to free up the scar tissue. A well- trained pilates teacher could also work wonders for you to gain strength and mobility to continue to support your spine well

[Itisfinished in reply to 13plus]

Hey 13plus,Thank you for your positive remarks and wise info. I didnt think about it being scar tissue. My skin is so tight on my back were I had surgery and they stretched my skin when they sewed me up. They also did not fill it in with anything. They just removed the crushed vertebraes. They couldn't put in a rod because my bones were to fragile however I prayed about it and I believe it was a wise decision. I didnt know if I would have made it through a 6 hour surgery. But I think they should have filled it in with something. I lost 3 inches. I do think pilates would help so thanks for the advice. I am praying all is well when I go on Monday.

God Bless you,

Michelle

[13plus in reply to Itisfinished]

It is really quite incredible what they can do these days with spinal surgery. Even though it’s a shame to have to lose those vertebra, it was most likely necessary. If you do want to seek out a Pilates teacher at a later point I might be able to help you locate someone with good training through my networks. Of course you would also need to get clearance from your spine surgeon first before trying anything new.

After you get the all clear from your scans , if you make fists with your hands and put the soft area between your thumb and pointer flat on your lower back, gently rub across ways on each side of your spine, or in small circles , it will increase blood and nutrient flow to the area and help get some glide between your skin and the fascia (just as long as it causes no pain this should be perfectly safe to do) . All the best with your visit next week!

[Itisfinished in reply to 13plus]

Thank you so much!

[Hidden]

Hi Michelle,

I don't think this is a crazy question at all! I can see where you are coming from, as we all want to be aware of what's going on in our bodies and take action. Since being diagnosed we are probably more in tune with our bodies than we were pre-cancer.

I can only go by how I was feeling prior to my diagnosis when the cancer was active and I had not yet started treatment. I had a constant throbbing sensation in my breast and pain in my side, that I thought was coming from my hip, but it was actually radiating from the two spots on my spine. When I initially saw my GP she said these symptoms were probably hormonal and linked to my period, so I returned a month later. But now I know these symptoms were signs of cancer. So to me, I have come to associate constant, throbbing pain with the disease. It may be different for others, but for me I feel that if you have relentless pain that does not go away it is a sign that the disease is active and possibly progressing. Conversely, I could almost pinpoint the time when the disease was brought under control and was stabilised when the pain stopped. It felt like someone had flicked a switch.

If you have a high pain threshold it may be harder to tell what is actually going on. I would discuss your concerns with your oncologist if you feel that you are dealing with progression. Scans will be able to tell you for sure what is going on.

Sophie

[Bettybuckets in reply to Hidden]

So no pain now? I wish that had happened to me

[Hidden in reply to Bettybuckets]

No, there is no pain. But if I overdo it by bending over a lot or picking up heavy items it puts a strain on my back.

[USIrishcolleen in reply to Hidden]

Sophie,

I also had pain in my pelvis/hip area in 2016, and thought it was from pushing a double stroller with the two boys that I nannyed for. I was not diagnosed until 3 years later, but by the time I was diagnosed the tumor was 5cm. Now I know, that I should have looked into that pain, and perhaps they woukd have found the cancer sooner.

Never again will I ignore anything that feels unusual in my body.

Best,

Colleen

[Iwasborntodothis in reply to USIrishcolleen]

Agreed I thought my hip pain was arthritis and from driving around the state for work… now I’m not so quiet about pain

[Hidden in reply to USIrishcolleen]

Hi Colleen,

I agree that we shouldn’t ignore anything that feels unusual in our bodies. I investigate everything and don’t leave a stone unturned if I suspect that something is wrong!

Sophie

[PJBinMI]

I have just known! I've had bone mets since my original diagnosis and have not had pain from those , even though they were described as "extensive" when first diagnosed. That was 17 years ago and when scans have shown progression, that has just confirmed what my body was telling me. Never extensive pain. And I can't really tell you how I have known, I just have. Something not right. I am on third line treatment and have had some progression recently so will be changing meds sometime in the next few months. Progression always relatively minor. But last Oct I had a blockage in a ureter (tube between kidney and bladder) and when it was removed (minor outpatient procedure) cancer cells were found in the tissue that was removed. I am to have scans and blood work next month and we'll see how much more progression. I have learned not to worry too much. But I am now 75 years ago and dying seems alot more normal than when I was in my 50s!

[Gorgeousness in reply to PJBinMI]

17 years! That’s so amazing! Can you share your treatment/lifestyle etc? You’re inspiring me!

[PJBinMI in reply to Gorgeousness]

I can tell you what you've asked about, but I believe my long survival with this cancer is more about the cancer cells themselves plus my DNA. My treatment has all been standard hormone positive her2neg bone mets only. Letrozole worked for nearly five years. Then Faslodex for over 9, and now Exemestane for a bit over 3 1/2 years. Zometa and now Xgeva for the bone mets. Lifestyle? Well, I didn't drink any alcohol for the first couple of years, just because I didn't want to feel the slightly light headed synthetically relaxed way it makes me feel. Then I thought, hey, I really enjoy a glass of red wine with pasta and a beer with enchiladas so why not. I've never been more than a very light drinker and probably only have that glass of wine or beer twice a month. My primary care doctor gave me suggestions about boosting my immune system: 1 cup of tart cherry juice, turmeric, fish oil and glucosamine chondrotin every day. I don't take those daily, more like once or twice a week. I also learned that tomatoes, bell peppers and egg plant are not good for the immune system. I don't eat fresh tomatoes very often any more, sadly, but haven't reduced how often I have spaghetti or other pasta. I get a flu shot every October and keep up on other inoculations and got the Covid vaccine in January. I think the most important things I've done were seeing a bc specialist onc for a second opinion early on and again more recently plus seeing other specialists for other health issues. I've not had pain from the bone mets but I have preexisting spinal stenosis and have had two back surgeries for that and there just happen to be bone mets in the area operated on, which made the second surgery last alot longer than planned but did no damage to the cancer. I have damage to the sciatic nerve, again not from cancer, and little feeling in my legs and feet, and that has effected my gait and balance. I'm 75 years old now. and pretty darn tired from cancer, treatment, other health issues, and probably age too. I have great family support though my family is small and except for my husband and two grown step daughters, none are local. I have attended several bc and mbc conferences and made a point of learning all I can about mbc and bc. We live out in the country where we're surrounded by trees and quiet. We enjoy our pets, too.! For a long time I continued gardening.

[Susan1953 in reply to PJBinMI]

You are an inspiration to me. I enjoy reading your posts. I am over 4 years into my de novo diagnosis which is ER positive, HER2 negative with bone mets. Ibrance and letrozole have been successful so far. I was 64 when diagnosed and I hope I make it as long as you.

[viennagirl in reply to PJBinMI]

Bless you for sharing your journey. I think you are a gift to all of us who think we are not going to make it. I have days like that but mostly I stay positive. But when I have a down day it is so hard to believe my life is worth fighting for. You obviously have also had days like that but you have just kept going and willing to survive this thing. I think you have done so well. You are amazing. I do think it is a good idea to continue to believe that I/we have chance for living a long time and maybe even healing. You are a real trooper and you are helping us all cope a little better. Hugs Marlene

[Klamato in reply to PJBinMI]

What a beautiful hero you are! Thanks for sharing! I am 78 now and have been on Ibrance and Tomoxafin for a year , then failed it with some growth. Presently I’m on VERZENIO and Tomoxafin and my scans have showed no growth, but rather the Mets have decreased. Thank God! I try to live my best life after being diagnosed with 4th stage 3 years ago. Let’s hope I have the good fortune to keep going and enjoy my beautiful family!❤️🙏🏻

[queeneee in reply to PJBinMI]

17 years from diagnosis is inspiring. thank you for sharing x

[USIrishcolleen]

Hi Michelle,

I think this is a perfectly valid question, and I think every one of us has wondered what every little ache or pain means, since being diagnosed with cancer.

I came upon this forum, because I was prescribed Ibrance for my breast cancer. Although my cancer is not considered metastatic I worry every time I go to the oncologist if this will be the day that I am diagnosed with it. I understand how every one feels about scan anxiety, and if and when the cancer will show up again or progress.

This is a good place for knowledge and learning and I keep each one of you in my thoughts.

Best,

Colleen

[debbiedo2063]

Hi MichelleI had breast cancer 2012 and 2018 and thought I was clear after both ops. In 2020 I had a painful lower back and numbness in the vaginal and anal area. GP kept giving me painkillers over 6 weeks it was only due to a telephone physio appt , due to COVID, where an experienced physio of 37 years sent me immediately for a MRI urgently that day and I was diagnosed the next day. I started Radiotherapy 4 sessions the very next day as an emergency. Not much pain since that was Nov 2020. Doing well. GP did not pick it up thank and I also did not think it was breast cancer, thought it was due to the amount of exercise I had been doing. Thank goodness for that physio. Owe him a lot.

I then had a CT scan which showed MBC in sacrum, nodes and pleural. Scans since are stable. Feel good .

Debra xxx

[JPutt]

I have extensive bone mets and have never had pain apart from the very occasional twinge which could or could not be related. Mine were discovered when a lump reappeared in the breast I had the orignal cancer in (2015) in 2019. I had a mastectomy and immediate implant on that side and they also sent me for a PET scan. I was taken aback as I had been having regular bone protecting infusions - the name escapes me - but those ones you have every six months. I was afraid it was in somewhere worse if anywhere. They also did a CA153 and that was 42 (normal in this lab is up to 25). Why oh why don't they do this test each year or six months after we have had breast cancer the first time? It would have alerted them much earlier). Anyway - when I have had progression my CA153 has always risen beforehand and I have had an uneasy feeling. Also I fancy I just feel a bit under the weather/below par. But THAT could be psychological cos I am worrying. One time in the April I had a "stable" CT scan but my tumor marker had risen and I just didn't believe the scan result so I pushed and shoved for a PET scan a few weeks later and there was new take-up.... This also happened to me when they tried weekly taxol and I just felt in my gut it wasn't working. I pushed and shoved fora second ultra sound on my liver and sure enough the biggest tumour had got bigger. On a happier note I am now on eribulin and after 4 treatments my liver enzymes have fallen dramatically and my CA153 reduced by 2/3rds.

(If anyone wants to know about eribulin any time - feel free to message me).

Sorry if that's a bit long and rambling. But always trust your gut I say x good luck and hope YOU get good results x

[kduck in reply to JPutt]

What will be your treatments after IV Chemo

[JPutt in reply to kduck]

Well I hope to get back on Xeloda! At some point. I was only on this for 10 days but it knocked back the tumour markers in that time. I was on ibrance and letrozole. This stopped working. A Guardant test showed I was resistant to Letrozole but gave a firm green tick to Fulvestrant. So we switched to that with the ibrance. Unfortunately the next scan showed progression from bones to liver!! Which was a horrible shock. So then I started Xeloda. After ten days I got bad sickness and diarrhoea so they told me to stop for the rest of the cycle and recover. 24 hours later my adult son, who is currently living with me, had the same symptoms so we concluded it was a bug - seemed to go that way - so I presumed I would be back on Xeloda next time. BUT all liver enzymes had shot up. Had another week off to see if they recovered and they rose again. So oncologist put me on weekly taxol. Didn't work - liver tumours grew. So then eribulin and liver enzymes now heading back to normal - ALT and AST only a tad above. Bilirubin low again. But I was really, really ill while they were sky high... until they came under control on latest drug I could barely stand and really feared I would die of liver failure. When I mentioned getting back on tablets to oncologist, she said it was too early for that conversation and she wanted me to stay on eribulin for time being. So I will... I am managing it quite well in all. Only real problems have been the first UTI s I have ever had in my life (ugh) and some hair thinning. I still have fatigue and muscle weakness but I am sure that is getting over weeks on the sofa when my liver was in meltdown rather than the treatment. That is probably far more information than you wanted but thought I'd give context x

[Hidden]

I felt the letrozole had stopped working when the breast tumors started getting bigger and harder. Able to get appointment to see oncologist and he confirmed progression. Now on aromasin but they have not shrunk at all.

[8576]

I have never known there was progression unless there was pain. No gut feeling. Generally I feel ok. My pain meds take care of my hip pain. I also have pathological fractures (4)) in my pelvis which cause no pain at the moment.

Cheers, June S.

[hdhonda]

When I think there is no progression, there is some and when I am freaking out thinking there is progression, there is none. Guess I am not good at self diagnosing. The moral of this story is that Dr. Hannah can't tell the difference. Blessings, Hannah

[Hidden]

I think we all worry a little and wait for progression.I had spinal surgery 2 years before my diagnosis. The pain before surgery was 100 times worse than the niggling pain in the sites of my mets.

I still get on and off back pains and weird foot sensations but I try to think of what I have been doing and can usually track the pain to an activity or lack of activity.

For me, I try to continue living and enjoy the time I have. I know I will get progression, but I am trying not to think of it and encourage it in any way and trust the treatment I am on for now. I am 2 years in on my first treatment line.

I hope this helps

Clare

[Itisfinished in reply to Hidden]

Hey Clare,Thanks for the encouraging words. It's always nice to be inspired by another bc warrior! People that dont have bc truly dont know what we have to go through on a daily basis. I had spinal surgery Aug of last year. They removed a tumor that was crushing two of my vertebraes which was causing paralysis however they removed it and cut the bones off and sewed me back up. No rods because bones were to fragile. They said I have extensive bone mets in alot of places. So I have pains but it's just in my back. I lost 3 inches after surgery. But I can walk and I considered myself a miracle. The drs were shocked. But I serve an almighty God that can do way more than a Dr can! What type of treatment are you on?

[Hidden]

You definitely are a warrior and a fighter.You are still healing from the surgery so hopefully you will recover some more. My surgery was small fry compared to yours, simple disc removal.

I am on Ibrance and Letrozole with Xgeva injections. I am certain it was these injections that helped with the pain when I started on them.

I hope you enjoy your summer little miracle lady

Clare

[urthmothr]

With me, it was knowing something was wrong, but not connecting it with cancer. It started with drainage from a nipple, which led to a diagnosis of DCIS and a mastectomy. Only follow-up was yearly Mammos and exams, but I noticed that I tired more easily. Blamed it on age and overweight. Then I started having rib pain, which revealed crushed vertebrae. I was seeing the doctor about that when I had a mild cold, and the doctor checked my lymph nodes. I had a huge one next to my collarbone, which led to a diagnosis of MBC, the same markers as the breast cancer. Still don't know whether the compressed vertebrae were from cancer or osteopenia, but it hasn't gotten worse. Sum lesson: listen to your body! Get any change checked by a doctor!

[ndastrogal]

I definitely had pain associated with progression. Two of my largest tumors are on the top of my femur in my hip socket and although I tried to associate the pain with muscle (different routine with exercise) it was progression both times. Also my tumor markers have tracked very accurately for 20 months with pet scan results so I have a pretty good idea if a treatment is working or not.