Bone Mets Thread
Comments
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Deb,
I remember when I had rads to my hip. They warned me about possible scatter affecting my bowels (it didn't), but they didn't warn me of hair loss - I have a bald patch on my pubic hair - now THAT I was not expecting! I'll probably lose the rest to Chemo, but will this lot grow back?
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Thinking of you too, Mary, and sending peace your way.
Amy, so nice to hear about your daughter's engagement, and what a blessing she has with you helping her along the way. Very exciting. So loved your pictures and stories about the train trip and you have convinced me, for one, that I need to hop on board.
Whitney, I'm late to your question, but my MO ordered a PET scan as part of my initial diagnosis process and that's when my bone mets were found on iliac and T11. Biopsy followed and confirmed.
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Suems, I didn't have any hair loss during radiation to bones, and can't speak to that, but did lose it all from chemo, I'm six months out from chemo now, and head hair is about an inch, but returned completely salt and pepper when I was a mostly brunette gal. Leg and chin hairs grew back the fastest! Eye lashes returned pretty quickly, but still have pretty sparse eyebrows.
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Hi All
Lynne, love the photo and so good to hear that your dh is eating. That alone will help him gain strength.
Mary, Sending some peace back to you.
Anyone heard from Myra? Dee, thanks for contacting Terre.
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Article in GenomeWeb on the MBC project.
https://www.genomeweb.com/sequencing-technology/fa...
.......and strides in metastatic research.
http://www.fredhutch.org/en/news/center-news/2016/...
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Linda, Thanks for the links - I especially enjoyed the metastatic research article - the researcher thinks not a single cell but a group of cells (he calls them thugs) travel in packs to move on in the body and set up residence.
BJSMiller, I appreciate the difference in levels of train travel and I'm sure if I had to sit in a coach seat for 3 days, it would have been entirely different than having my own room including bathroom and shower. I do hope you can experience the train just as I have. It was an absolute thrill to sit back and look out the window and anticipate the next bend in the track, the next river or mountain. I hope you take the opportunity.
Amy
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Good morning ladies hello to all the newbies welcome and I'm so sorry your here but like myself I hope this group of ladies brings you some hope and clarity.
I have a quick question have any of you ladies heard of the recent breakthroughs in the UK using HIFU ( High intensity focused ultrasound)? They are having great success in England and Germany killing off bone mets with this procedure.
Loving all the pics so nice to see life going on as usual. Keep them coming please. As to the question on how the mets were found. With myself it was first X-ray your good stage two then bone scan and oops your stage four I try very hard now not to think of those days was not fun.
Have my daughter visiting so I'm in seventh heaven she finished up her third semester and decided to visit her old mama. Yeah take care ladies i wish you all the very best.
Wendy
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Suems, same thing happened to me when I had rads to pubic bone, it will grow back.
Dee - thanks for the update on Terre. Bone scan coming up shortly for you huh?
Lindalou - I sent a pm to Myra about 3 weeks ago and have not heard back from her. Mind you, I did mention it was ok if she didn't feel like replying. But still, I'm worried about her.
Mary - nice of you to pop in, don't worry about catching up. Thinking of you and if you feel like "talking", don't hesitate to pm me.
Good day to all
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Wendy, do you have any links on the HIFU being used in the UK and Germany? I'd love to read more about it. Is there collateral damage or are there serious SEs with HIFU?
Barbara (Bjsmiller), is your avatar new? I don't recall seeing it before, and always great to put a face with a name!
Linda, thanks for those articles. I'd noticed the one out of Fred Hutchinson yesterday, but hadn't taken the time to read it. I'm glad you had the link. It is so encouraging to see the need for metastatic research message being heard!
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Deanna, it's been a while since I (finally) put in an avatar, but I haven't been posting a lot lately, so that's probably why you didn't notice. Now that I finally have a good amount of hair back (all gray), I'm thinking of dying it this weekend, I may change it again! We'll see how it goes.
Linda, yes, thank you for those articles; very interesting. I'd love to know more about what you found, too, Wendy.
Best to all, Barbara
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Hi All,
I heard about HIFU when my husband had prostate cancer. His surgeon said it may be in the future for prostate cancer but no clinical trials in US at that point ( that was 2 years ago) He also said it was only for contained cancer and not cancer that had spread. He teaches at Stanford and has been on top of many new treatments so he keeps us updated with a monthly newsletter. If I receive any more info I will certainly pass that along. Research/treatment could have drastically changed since then.
Enjoy your visit with your daughter Wendy, and to all the ladies who have grandchildren, enjoy and send me a grandchild for a day!
Linda
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Hi Barbara, I never lost my hair, but I did stop coloring it. I have a lot of gray now. I am thinking of coloring again but have not made a final decision. Do I want to do that and then have to continue doing it? Decisions, decisions. In the meantime, I am also trying to decide on a new hairstyle. I had the same one for years, but I have done nothing at all to it since my husband was first hospitalized in December. Now that he is home and doing well, I find that my hair comes down below my shoulders, and I have to do SOMETHING.
Today it is really nice out. It is about 60F and sunny. I have been working in my garden, and I am loving it. The bugs aren't out yet, so I can really enjoy myself. My DH is painting the shed. I can't help but smile when I see him out there doing things again. Late this afternoon we will go to our grandson's baseball game. He is on his school's freshman team
My spit kit came today. I will have to buy a lemon so I can fill up that tube. I sincerely hope that the research provides clues, answers, valuable information, and eventually a cure for mbc.
Lynne
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Lynne,
The first time I colored my hair after chemo, I used an all-natural dye found at Whole Foods - I wanted a dye that was much less harsh than other store-bought chemical based color. I took it to my stylist who, after a couple of days research, found a better product, much less harsh than even the stuff I purchased from Whole Foods. She said there is a newish line of coloring products designed just for us ladies with fragile hair due to chemo. I do not remember the name of the line, but if you go to a stylist, I'm sure she can find it for you.
Good luck - I felt like a whole new person after that coloring. The anniversary of my last cancer, July 3, 2013 is coming up and I've gone back to normal products without any difficulties whatsoever.
Good luck to you. I hope you feel beautiful again.
Amy
PS - I've wondered if there are any salons dedicated to pampering women or men going through chemo. A peaceful place with natural products, compassionate care, soothing environment and just an overall calming atmosphere with trained attendants who can provide massages, nail treatment, hair cuts, touch-up color, shampoos with gentle products as well as styling wigs, or instruction for wearing wigs. Oh well, just a thought. Maybe such places already exist but when I did a google search, I couldn't find any.
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Hi Amy, there is a salon in Denver called Hana's Designs that pretty much provides all those services http://www.hanadesigns.com/salon-and-spa.html. They cater to cancer patients because I think the owner herself had cancer. I haven't been there yet, but I mean to check it out.
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Amy, actually there is something (a foundation) a bit like that in Brooklyn, although I don't think she does hair & nails. I'm familiar with it through a mutual FB friend. I believe she gets most of her services donated. http://youcanthrive.org/integrative_breast_cancer
And here's a neat related story I came across while trying to find the youcanthrive website -- a spa that does offer some treatments specifically for oncology patients. http://www.dayspamagazine.com/article/treatment-op...
Lynne, the last time I had my hair colored, my stylist also used a much more gentle product, although I never saw what the product was. Also, when I was initially thinking about coloring my hair myself -- due to how fragile it's become since I've been on Ibrance -- I came across this line that might be worth looking into. I haven't tried it yet, but it's free of many chemical ingredients. https://www.madison-reed.com/
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Linda the article I read said specifically targeting bone mets from breast cancer. So my little light went on. Deana I get an email newsletter from a British doctor every month with all the new news on cancer. He's the fellow who wrote the Rainbow diet Chris Woolhams. I can forward the email to you if you'd like to have a look ? Always some good info.
Wendy
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BJSMiller - I am from Denver as well and went to Hana for the "halo" I wore the entire time I was going through chemo. They just moved to a new, bigger space and it's wonderful. Sounds like you are well past the wig stage but they were great about fitting me and eventually steering me to the halo, which is worn with a hat. I actually LOVED that thing, as stupid as it sounds. After my hair grew back I took it to my hair salon to see if they could color my hair the exact color of the halo hair.....but no luck.... so I've gone back to being a blonde. I think you are right about the owner having cancer herself.
XO
Andrea
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Wendy, I'm very interested in the article too if you don't mind forwarding (jenscottpowers@gmail.com)
I'm seeing my RO next week and can ask for any insight he can share too if helpful
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Jen,
The mods strongly suggest that you don't publicly post your personal email address, and will delete it if they notice it. Anyone, non-members and the general public, could easily see it.Why don't you pm it to Wendy instead?
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oh thanks for the reminder! I just deleted
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That's interesting about the HIFU. I will ask onc if he knows anything about it. Also need to touch up my roots but hadn't looked into colour yet.
I was on this board a little while ago. Diagnosed with met to pelvis and spot on femur. Onc decided to radiotherapy the area and plan was to shut down ovaries and move to arimidex with bone strengtheners. Onc said it would be slow moving in my bones. It's been nearly 2 monthe since first scan and my last mri 4 days ago showed progression with tiny spot on sternum and tiny spot on spine t9. A couple of spots have appeared on pelvis. All organs are clear. Getting implant to shut ovaries down neXT week. Have to say I'm very scared that things have moved so quickly. He says Ai for 2-3months then scan and maybe chemo. Ibrance is not available yet in UK. Will it be difficult to see if it's working after so little time and now I have multiple places... I'm very worried. Any thoughts x
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Hi all,
My wife started taking Ibrance 2 weeks back and today her lab work showed the following numbers
WBC 1.5 K/uL
NEUT, ABS 0.51 K/uL
LYM, ABS 0.86 K/uL
MONO, ABS 0.07 K/uL
Platelet count 106 K/uL
Onc told her to hold off for one, check the numbers again and then decide. Has anyone faced such situation ? She underwent radiation to her pelvis which lowered her numbers below normal (but not this low) a couple of weeks before she started Ibrance.
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Lilly - I will just share my personal experience with you. After my first follow up scan 3 months after starting Femara, new small mets appeared and axillary lymph node was bigger. Onc then changed me to Tamoxifen but side effects were too hard to handle for me. Since everything seemed stable at the next scan, we went back to Femara and it's working for me (now about 2 years on Femara). Onc was not worried at all putting me back on Femara, (I was) because what happened to me was common in the first few months of tx. I understand your Onc's thinking of continuing with AIs for 2-3 months. Exactly what happened to me. I'm not trying to tell you what to do, just sharing my experience.
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I was originally diagnosed in January by CT scan with mets my liver. They did a bone scan as well and neither the bone scan nor the CT scan showed mets to my bones.
I had a PET/CT scan 3 weeks ago that found that all my tumors were responding to my treatment (ibrance/letrozol and a complementary melange) but i had mildly hypermetabolic lesions in my sternum. I am pretty sure it is not new. I believe they either missed it the first time around or it is a false positive. Two questions:
How frequently does a PET scan pick up things a CT or bone scan does not?
How frequently does a PET scan give a false positive of bone metastasis?
The oncologist is not doing a biopsy because she says that weather or not the sternum has cancer will not change her treatment plan. I have a primary tumor that is <3cm at this point (down from 4.4cm, I am responding well to treatment). All the associated lymph nodes in my armpit and a few elsewhere are compromised. And I have 4-6 tumors of <1.5cm in my liver. I think she feels that there is no point in chasing the bone metastasis with all that going on. Should I get a second opinion? I am wondering how many treatment options I really have at this juncture.
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Thank you LindaE54 for sharing. Glad femara is working for you. I suppose my Arimidex is not working until they shut down my ovaries which will happen next week so i need to give it a chance. I just sometimes think the doctors read off a script. After the shocker of hearing I had mets after 4 years onc told me that it is very slow moving in bones and people live for years. This relaxed me a little as i had to get all the extra scans and wait for bone biopsy results which took a while to then find I had mew spots appearing in different places. Am anxious for them to get ovaries shut down so my Ai can get working and get my bone strengtheners. Hopefully next scan in a couple of months will be better.
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Lilly - I missed that part regarding ovary shutdown in your previous post. That is a must and will change the picture. Good luck and keep us posted!
Zarovka - I think you are new to this thread, a warm welcome to you. I don't know if there are specific stats to your questions and hope someone with more knowledge will chime in. I went for a second opinion when I was dx'd with a top specialist. Prior to this visit, I had CT and bone scans that picked up bone mets. This specialist requested a PET scan which showed a femur met that was not picked up by bone scan. I was very perplexed to say the least but he explained that different imaging can pick up different things and that bone mets can be very tricky. Glad your tx is giving such good results! A second opinion is always good to have and bear in mind there are many other tx out there. Wishing you the very best! It would be very useful if you can update your signature line in your profile so see pathology, tx etc.
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Zarovka welcome to this thread. Sparki rn once wrote a wonderful post on how different scanning is helpful for different things and how bone mets can hide from scanning. I hope she will see this and help you out.
My thought is that treating metastatic cancer is a tricky thing. For me, trust in my care providers is so important. My MO really encourages second opinions especially if I feel he can not get answers to my questions. So yes I think second opinions can be very helpful.
Good morning all I am thinking of Party and Bosco and hoping you are both comfortable. Christina I hope you had a beautiful birthday for your daughter.
Peace to all
Mary
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Mary, I have been thinking of you! Hugs, Carol
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Hi everyone,
I just completed my first week of radiation on two back mets, one in the middle and one lower back. I was wondering if anyone had experienced some of the side effects I'm having. If you're queasy, please don't read on...it will be gross.
I vomited about an hour after the first treatment, then had really severe stomach cramps/diarrhea for hours the following morning. The next day (day 2) I took Zofran before my treatment and had no nausea, but I again went through the severe diarrhea the next morning. I started taking a bunch of Imodium and that went away, along with changing to a BRAT diet.
Of course, I am now constipated so I took a stool softener and gentle laxative and I did have three small bm's today, but I woke up in the middle of the night with vomiting. It's been about 36 hours since my treatment, so I am so confused.
My radiation doc did tell me that nausea and GI issues were possible as the treatment wore on, but I wasn't expecting them so suddenly and so severely. During my last stint at radiation 8 years ago, I didn't have any of these problems.
And I am really scared and I just vomited with no apparent reason. I don't think it's anxiety. Has this ever happened to anyone else?
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newslady, Sorry you are feeling miserable and guessing your vomiting is a result of the beams exiting the stomach. I had the same thing. Where on your spine is the treatment?
I had 17 radiation treatments on T-8 through T-12 and had some nausea. Then had repeat 15 radiation treatments in that same area 2 years later and ended up just like you with nausea and vomiting as well. I took zofran throughout the treatment consistently ( that is the key) and that helped. Keep it on board so you don't get behind the nausea curve. I also ended up halfway through with a scopolamine patch behind my ear for 3 days on and 3 days off which helped the nausea as well. Be sure to tell your RO about it as he/she may have some other remedies for you. Yes the BRAT diet is the best with eating small meals during the day. If you get acid reflux from treatment, they may have you start Prilosec but best to talk to your RO about it. How many more treatments will you have? Are you having SBRT or IMRT by any chance? Hoping you find some relief. Best to you.
Linda
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