De Novo Stage IV
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Denny123, I should have written my response here but put it in the Xeloda thread. So happy for you.
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denny123: That is good news from your MO. C'mon, girl, you have 20+ years under your belt. We are counting on you!! :-)
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Cyathea - Have you actually tried the tennis ball thing for your back pain yet? How comfortable are you doing something like that if you have spine mets? I'm asking because I too have a lot of back, chest, and arm pain from bad posture, computer use, etc. For the last couple of years, I have had these pains and when I go get them checked out, I've always been told that it is muscle problems from bad computer posture, etc. I got something called a "backpod" (it works like the tennis ball, only costs a whole lot more!), and I got mixed results. I gradually stopped using it about 2 months ago.
At about that same time, I started having some more chest, back, and arm pain (thought it was possibly because I'd stopped using the backpod) and then one day, I had a real weird experience of rapid breathing, so I went to the ER. I fully expected them to tell me it was muscle strain and possibly an electrolyte imbalance, as I've had to go there occasionally for that with related symptoms. Well to my utter shock, they told me they were seeing all this metastases in my sternum, ribs, and spine, so I went from stage 3 to stage 4 seemingly out of nowhere. I decided that with the mets to the spine especially, I should probably not use anything like the backpod or a tennis ball for my problems, as I don't want to cause a fracture or some such thing. I stopped with all that, but in the meantime, my back and chest pain especially got worse, so just this morning I thought I would use the backpod again, but at the easiest and gentlest level (lying on the bed with 2 pillows, and gadget off to the side of spine, not directly on it.). After I was done I did briefly have that muscle relief feeling that can come with using a device like a tennis ball or backpod, but within a few minutes I was tingling and experiencing some very sore upper body muscles, heavy legs, headache, and more, and I became terrified that I had caused a fracture or done something that made things worse. I spent this morning a total "freaked out wreck", but as before could not tell if this was from the spine and chest mets, and I had caused damage, or if I was having a panic attack. The symptoms are so similar.
I took some time out to lie down and walk myself through a meditation video and then felt better, thinking that yes, maybe it was panic. A few hours later, I was listening to a lively "oldie" on the radio and felt like dancing a bit in my kitchen. I did that for only a couple of minutes and then all of the heavy leg and sore upper body muscles and pain came back. I'm still not back to normal. I can't help but think that the backpod did something that was not good at all. I am now super scared to use anything like this backpod or a tennis ball, foam roller, (some use a lacrosse ball, I understand) ever again on my back. I even purposely avoided putting it right on my spine, but off to the side.
Have you actually talked to a doctor about using the tennis ball and just how OK or not OK it would be to do this sort of exercising? I have not, and I suspect they would say not to. I'm just real curious, because I think I have similar problems to yours, and am coming to the conclusion that it is too dangerous to do anything like the tennis ball idea. I would love to hear any thoughts or comments that you might have about this.
Thanks so much, Cyathea.
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cyathea, threetree,
You may want to consider asking for a PT referral. I've had good results with PT for low back pain and shoulder pain/reduced range of motion due to arthritis. I recently started PT again for cancer fatigue due to chemo, strength and endurance building. I also have spinal mets, so like you I'm concerned about compression fractures. PT likes to use Resistance Bands for easy strengthening exercises.
I've also had good luck with the Pete Egoscue method for promoting pain free good posture. His book is on Amazon: "Pain Free (Revised and Updated Second Edition): A Revolutionary Method for Stopping Chronic Pain". The content is solid and easy to follow. If I remember correctly he has videos on YouTube. To go along with the book I bought: 1.) Pain Free At Sea LARGE Foam Block 2.) Pain Free - Posture SMALL Foam Block with the Aqua Strap/Yoga Belt, and 3.) Yoga pad. I do a 20-30 routine most every day that I put together based on his book. If I slack off I can quickly get into problems with poor posture, muscular pain, stiffness, reduced mobility. I particularly like his Static Back position - just taking the position for 10 minutes and adding deep breathing, can relieve minor aches and mental stress. I know it's an investment in some equipment up front, but his approach has worked for me, as long as I do it.
Hope you both find an effective approach for reducing muscular pain.
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I'd go with a physical therapist too. Plus, see if your cancer center offers massages
I found this book helpful. At the bottom is a link to download a pdf. She updates a lot so I figure I'll send her the price of the book. The section on treating bone pain was a blessing.
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Wendy and GoneGirl - Thanks so much for your input and suggestions. I will check out the book and videos you mentioned, Wendy. GoneGirl - I actually just got that book from Amazon a few days ago, but haven't looked at it yet. Someone else here recommended it too, so I ordered it. I do think that PT is the next place I should focus, but I've had some questionable experiences with them too. I don't think the doctors themselves really know much at all about any of this, and I wish they did, and maybe think they should. If I ever bring this sort of thing up with them, they just refer to PT. I'm one of those more odd situations where I have found my surgeon to be much more helpful than the oncologist. I had mentioned both lymphedema and tight chest muscle problems to the oncology staff more than once, and they would just say things like, "Yeah that happens sometimes". It was my surgeon who one day took one look at my arm when he walked in the room and said, "Looks like you've got a lymphedema problem!" and made an immediate referral to OT for me (my facility uses OT for lymphedema whereas most others use PT). He retired and I now see his partner. She too has been very helpful in making OT/PT referrals when I've asked. The oncologist and staff continue to seem blind to it all. (The lymphedema has actually been mild to this point and not all that much of a problem, but the chest muscle thing has been ongoing ever since my original surgery in July 2019.)
I saw the OT for chest muscle problems and left arm lymphedema starting a couple of years ago. She gave me some stretches to do and when I'd see her she'd do some sort of special massage on my arm and chest for the lymphedema. Re the stretches, I found that some of them seemed to help, but some seemed to make the problem worse. I watched some random online videos and in one a chiropractor suggested that some of the stretches the OT had suggested would only aggravate the problem (that matched with some of my experience), and he had his own system. I don't know how credible he was/is, but seems to be legitimate and has a website, etc. (can't even remember his name now). I did seem to be better when I stopped doing the stretches he said would be problematic. I also got the backpod (for chest muscle problems) after seeing videos and reading about the New Zealand PT who "invented" and promotes the device. That too helped in many ways, but can cause problems if you have osteoporosis (as I do) or things like fractures. He advises to use the backpod with extreme caution under those circumstances. I never could quite manage to come up with a routine and anything that really worked for me. I put together an eclectic routine from all of these sources.
After about a year of all that, I decided to try PT in addition to OT to see if their perspective would be any different. By that time I had been told by some doctors and PA's, that a lot of my troubles (back and chest) were likely do to computer use and bad posture. I wanted to see PT to focus on that issue while continuing to see the OT for the lymphedema and surgery chest tightness. Well, when I told the OT I was also going to be seeing the PT (the surgeon gave me a referral), she seemed to get a bit miffed and said that if I was going to see PT, I didn't need to see her. I told her it was for these computer use and posture issues, but she decided that I should drop her if I was going to see PT, so that was that for OT. The PT had a completely different approach and said that while she was aware of things like tennis balls for the back issues, she had some sort of stretching/deep breathing/ multiple changes in body position method that she used. Well same thing, I tried what she recommended and some things seemed to improve and some seemed to get worse. I eventually stopped all of the appointments, but continued with some of the things that seemed to work and didn't do the things that didn't help. When I had asked both the OT and PT for more specific guidance about why I wasn't getting real positive results, e.g. was I overdoing or underdoing things? why were the things they were suggesting different from others online and each other, etc., they would just be very vague and say things like, "Well you'll be able to tell", or "just do what you're comfortable with". Also, I got the impression that what was actually causing the pain was not really an issue to them. When I told the PT I thought I had costochondritis and that a couple of doctors had also used that term, she did not focus specifically on that, but just had this general, "Well when we see people with sternum pain, we do XY and Z". The cause of that sternum pain seemed irrelevant. What if it was cancer? Seems to me if the cause is unknown, you could be making something worse. The OT also seemed to have a pat treatment plan for lymphedema and chest pain, but no real understanding or interest in the underlying cause. That's one of the reasons why I wish the actual doctors would be more involved in all this - they are the ones who seem to me the most likely to understand the actual cause and possible consequences of some of these exercise plans.
Sorry for the long rambling here, but I am just a mess these days. It's been a month now since my stage 4 news and I'm still not in a normal place yet (doubt that I ever will be at this point). I think maybe I should do some digging and look for a PT who really knows specifically about cancer and exercise. The ER doctor told me that the pain I've been having could still just be muscles, but he also said not to minimize the fact that I do have cancer in my spine now. I'm just afraid sometimes that these "experts" don't really know what they are doing all the time, and often just "wing it" and that in some cases that can be dangerous. (I know I'm really anxious and paranoid these days, but ...)
Thanks for so many of you lending your ears, offering your thoughts, while I freak out.
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threetree,
I can completely identify and empathize with your experiences and frustrations. Luck of the draw with these specialty and subspecialty practitioners seems to be much of it. I'm dissatisfied with my MO and describe her limited responses to my questions as institution centric and not patient centered. Pat responses like, "it's the practice protocol" or "it's not the protocol"...and nothing more. The focus of every 15 minute appt seems to be on the time - get 'em in - get 'em out. I feel like a number. Being told "don't worry about it" is another frequent response that I have started to openly object to. I've had a different experience with my second opinion MO from Mayo. These video visits are more like 20-30 minutes, she is open to my questions and explains things more fully. On my first appt with her she spent time explaining a deep breathing routine for anxiety control. I feel cared for. I posted this breathing routine previously, but don't remember which thread: Deep breath in for 4 counts - Hold 6 counts - Exhale over ~7 counts and HUM during the exhalation. HUMMING has it's own positive health effects.
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Wendy - You are always so nice to hear from and so helpful! Yes, my MO also often says things like, "We just don't do that." She's also told me she doesn't understand why I just don't blindly accept everything she says and that, "We tell you what you need to know", when I reference my own research. She's generally a really nice person and I think she means well, but doesn't always come across well. She too is always pressed for time - not sure that's always the doctor's fault, as insurance companies have a lot to say in that, but it still makes for a "bad look" in a doctor.
I still have all the info you gave me before re Mayo, and I'm going to do something about all that later this week or early next week. I've got a lot of work things to catch up with this week, plus the visit with the MO to go over the recent scans and talk about what she wants to biopsy (yuck!!!!). After the biopsy results come in, she should know what sort of treatment plan is in order, and hopefully when that happens, I might feel a little better?
I find deep breathing real helpful, but have to try the humming with it. Thanks again, so very much.
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I do think you should educate yourself as much as you can. You then understand options- some MOs know less than others and don't go beyond the "recipe" they know. Your idea may be better than theirs. "that is our protocol" doesn't cut it for me. "just do what I say"- ah- no. I do think that MOs probably hear all sorts of googled weird stuff- but, still, maybe some of these issues can be managed through email and you would get a better response?
My second opinion visits were longer, but pricy - I make a list of my questions- that helps, they were not too useful besides seconding what my MO was going to do, which was reassuring- but, being on this site and reading and listening to podcasts- I am fairly well informed.
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Ugh, I would give anything to have a dedicated MBC cancer-specific PT. There is a PT group near me that specialises in post-cancer PT, but a) its REALLY expensive and b) I think they only do survivors. Im too chicken to call and ask. Also, I hate talking about my diagnosis to people in general. Hospital PT is WAY too busy for anything more than rudimentary exercises they must give to everyone, and my exercise needs are different to some 70+ year old recovering from treatment. I did have an incredible lymph massage nurse at the hospital who took care of my cording, but she went back to Greece apparently.
I am in PT now for whatever this hip/illiolumbar issue is and its getting there, slow but frustrating. I must have been far more deconditioned last year than I thought. All I did was go swimming! Scans show nothing happening so I guess Im just going through a rough patch. The PT is fine and helpful in finding adjustments for me, and takes care around my lower back, but I do still worry Ill need a referral to an orthopedist or a cortisone injection. Once I get this sorted Id like to move on to assisted strength and conditioning because I have a tendency to go balls to the wall like Im still 28 and doing high levels of training, and lord knows thats not true.
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Nkb - Always so nice to read your comments. I really do believe in getting as much information as you can to weigh options. I really appreciate the input from different doctors and nurses - it helps me feel better about decisions I make. I am strongly looking into obtaining at least a 2nd and possibly 3rd opinion. In my case I'm under the assumption the Medicare will pay. For something so serious, it seems very important to get all the information and opinions that you can.
Sondraf - I think you hit the nail on the head with the notion of hospital PT being so busy that all they provide is routine exercises for people. I don't know what the answer is, but I've lost some faith in that whole OT/PT thing. I'm still open and willing to go see some of them, but feel like I will have to be real cautious about anything they tell me and suggest that I do. Like with the doctors, I think many opinions are valuable and that we need to educate ourselves as much as possible and then weigh all the options. A lot of these people just don't agree with each other about causes and treatment.
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threetree, I saw my physical medicine doc and my MO on Friday. The PM doc said that using the ball was fine and recommended that I see a PT for some additional exercises. My MO wants me to do a PET CT and MRI just to rule out progression. He said it’s probably fine.
I believe my MO, but now that I have a scan looming, it’s hard not to think about progression
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Hi, everyone. Just bumping this thread. I hope you’re all doing well. I have been off Xeloda and just on Faslodex for three months now. Faslodex seems to be doing okay by itself.
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I am, to use a phrase common in this country, 'bricking it' for my scans tomorrow. Whole body MRI (actually very relaxing, i love it!) but with the ongoing hip saga, Im still worried there is progression somewhere or a fracture or something. This was ongoing before my last set of scans, my most recent bloods look fine, and it is slowly slowly improving. I guess I just dont want them to find like my femur is about to fracture and its more surgery. I cant imagine it would be that either! Pretty sure its just a load of tendinitis and one hell of a quad/illipsoas strain but this is cancer and you cant logic it away.
Wont get results until next Friday, unfortunately. Just want to get through this so I can get oncology sign off to go get poked by orthopedists!
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SondraF, I’ll be thinking about you. I would love a whole body MRI. Getting them in bits and pieces is such a pain.
Please come back and let me know how it goes. I’m hoping everything is stable for you and you don’t need surgery.
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hi
I saw you’re taking Lynparza do you have the BRCA2 mutation? I have somatic BRCA2 along with PIK3ca and ERBB2. I know we chatted in the past. I wonder how your doing on this drug?
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Hi there - I have genetic mutation - BRCA1. Doing great on Lynparza, no issues with neutropenia like I had on Ibrance and only have a little bit of upset stomach in the morning (its totally got a pattern to it too so I know what to expect). I did have a rough ride the first six weeks with a gallbladder attack but we got that under control and off I went.
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SondraF - a week feels like forever when you're waiting for scan results. I'll be hanging out in your pocket while you wait. And I agree with you. I used to be really good at "logic-ing" things away. Now I can only logic them into a little box ‐ so I can take it out later, worry over it a little, then put it back. And repeat.
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seeq - actually Im fairly lucky in that regard, if I was still in the public system I would be waiting three weeks. I said F that and got myself into private care over two years ago. The wait hasn't been too bad, got some home projects going on and work stuff, etc. I just want to know one way or another what TF this is so I can go get it sorted once and for all. I was telling hubs last night that this is like the fourth spring in a row of living like im in lock down - 20/21 were both Covid lockdowns, 22 I was recovering from surgery and now 23 this bastard hip problem. Mentally its more tiring than physically.
I do wonder if I should have called it in and had the scan moved forward two weeks, but it just isnt that type of pain, I have no weakness, and Im gaining function (and some nicely sculpted legs as a bonus). Watch all I will need is a cortisone shot or something right in the butt and voila! five months of angst wiped out in two minutes. If that happens Ill be really REALLY annoyed.
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I had my first endoscopy four years ago on this date that finally gave me the answer of de novo breast cancer. So happy to still be here.
SondraF, sitting with you while you wait for results
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KBL - we're pretty happy you're still here, too.
SondraF- as annoying as that would be, I'm still hoping for an easy solution for you.
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Blaaaaahhhh - minute growth, tumor markers up 10 points again this month (still <60 though), onc wants to change treatment from next month. And its the active cells in the hip everywhere else is fine. One more month on Lynparza with Guardant 360 next week to and she went down the list of some potential next lines. There are a lot of lines yet, but its still disappointing. Ultimately got about 14 months on Lynparza.
Trying to look on the bright side that this isnt a massive drug fail and its all still bone only, but I was really hoping for stable so I could go finally take a vacation. Now we have to wait until I see which drug and the side effects.
Having sympathy pizza for dinner.
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@threetree I hope you are doing better with your SEs.
My PT is also a medical doctor. I have a follow up appointment mid-May. So far, the stretching exercises and the lacrosse ball have not helped my pain. I’ve been doing the exercises 6 days a week. The exercises have helped range of motion and improved the tight pectoral muscles on my right side, but the back pain is the same.
The pain is worse at night. It hurts to breathe and yet all the scans have been good. My PET CT didn’t show any progression. I’ll have an MRI in June.
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Sondra, I’m not sure if I’ve seen, have your markers been rising steadily? I go up and down at this point, usually at least 12 points. I hope you can find a med that keeps them steady.
Cyathea, I’m sorry your back pain isn’t improving.
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Cyathea - Wow, I'd love to see a PT who is also a physician. I'd been wondering if there even was such a thing. I'm sorry that the exercises and lacrosse ball have been of limited benefit - also that you have that pain at night. One thing I am grateful for is that I don't have pain at night; nothing that wakes me up or anything. It's once I'm up and around that the pain starts. Well, I had an episode last Sunday of sudden sharp chest pain, so went to the ER and they diagnosed 2 compression fractures in my spine and a sternum fracture. I think that is probably what has been causing my most recent pain. I think the "old pain" was due to the surgery and radiation after effects of tight muscles, etc. and then the computer slouching and poor posture. I'm afraid to even do things like stretches now, as I'm afraid it might aggravate the fractures or cause more. I'm just so glad to hear that your scans have turned out fine. I really hope you find some relief though, that pain and difficulty breathing at night is not good.
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Sondra F. 14 months is not a bad run on Lynparza. I hope the next drug works longer. I had a massive drug fail and colon progression after 15 months into this mess. I hope you’re finding relief in that hip and get to that vacation you wanted to go on!
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Ddil,
So sorry to hear of your progression. I hope your next treatment works well for you.
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Sondra, pizza is good.
I have decided to just go on the ride the chosen Dr's and teams think is best...currently hoping verzenio is tolerable for a while, but mostly hoping to get movement back in my frozen shoulder. I have aged 20 years In the past 3.
Figuring out this new "new" forum. Wishing you all well.
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SondraF, so sorry to hear of your progression. Girl, you need a vacation! Maybe before your treatment change next month? Last minute cruise? Weekend getaway? I hope you can work something out.
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Thanks all - itll be ok, I just wanted another 3-6 months on this drug.
kbl - they had been going up steadily, about 10 points each month. I dont have huge jumps, in fact, they were all surprised last year when I grew a good sized met when I was recovering from surgery as the tumor markers weren't showing anything. One of my concerns with the WB MRI is that yes, it can show disease brewing much earlier than some other scan protocols, but at the same time I wonder about jumping the gun and changing too quickly. In this instance yes, I think a change is probably due as when we went over the (rather extensive) report I definitely could tell exactly where they were talking about due to recent pains I had been assuming was something else. I guess its a super fine line to walk in treatment changes, but I also realised that hey, this gives us 4 weeks to get ducks in a row regarding the Guardant stuff, a second opinion f I want one, etc.
Vacation is tricky - there are so many extra days off and a zillion people in town because of the Coronation next week that the airfares and train fares are through the roof. Maybe Ill have another look again over this weekend and see if there is anything good out there, use the pile of airline points we have, order myself a travel cane, and just go.
At the very least Im booking a pedicure for today or tomorrow lol.
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