Second opinion with well known bc onc - SHARE Metastatic ...

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Second opinion with well known bc onc

PJBinMI
PJBinMI
20 Replies

This is going to be long and I will summarize my 15 years with mbc after I describe my appt this week at U of Mi CCC! My husband accompanied me for the nearly 3 hour drive each way for my appt for a second opinion with Dan Hayes, one of the wise elder bc oncologists. It hit me half way there that it had not occured to me that I might not like him! lol But as soon as he walked into the exam room I just knew that I was in good hands. He and my long time and recently retired onc have known each other for most of their careers and are friends as well as professional colleagues and he just beamed when I mentioned her! After examining me and reading alot of my history/scans, etc, he told us that if he had been treating me, he would have done exactly the same things my onc has. He suggested Tamoxifen as a good next choice when I get to that point. He also told me that my lung condition would make it unlikely that I could get into any trials. When I asked about end of life planning (strictly the medical part, I've taken care of the legal/financial part ages ago), he said that is likely to be a long way off! He was definitely on my wave length as far as communication and treatment go. Obviously it is impossible to predict time frames and he was very tactful in indicating that. Anyway, I felt encouraged and have felt more positive than I have been each morning when I wake up. Oh, he also said that he wished he had medical students with him that day so they could see that living a long time with mbc is in fact possible!

I really encourage any one who hasn't seen a bc specialist onc at one of the Comprehensive Cancer Centers to strongly consider doing that.

My cancer history in brief: diagnosed 3/2004 and bone mets during initial staging. Had lumpectomy and biopsy of bone met. E + P + her2neu -, invasive lobular bc. On Femara (letrozole) and Zometa with good results. Got nearly 5 years from Femara. When it failed, I had a second lumpectomy and switched to Faslodex. I am allergic to Zometa and so received just a half dose of it with benedryl and hydrocortisone prep plus 2 hour infusion time and extra IV fluids. As soon as Xgeva was approved by FDA, I switched to it from the Zometa. When I started on Faslodex, the usual dose was just half what it is now, and when the larger dose became FDA approved, I was given the larger dose and quickly became NED for several months but under two years. I don't remember exactly how long that lasted. But I got over 9 years from Faslodex. In 2016, Ibrance was added to the Faslodex but it damaged my lungs and gave me Interstitial Lung Disease which my pulmonologist described as like gunk between the air sacs. It has been mostly stable but I do get out of breath easily and really have a hard time outside when it is humid.

My biggest health issues on a day to day basis are fatigue, getting out of breath, a scarred sciatic nerve not related to cancer which has left me with impaired feeling in my legs and feet (neuropathy!) and a spotty rash that my onc, pcp and dermatologist have not been able to figure out or get rid of .

IF anybody has had good success getting rid of a persist ant spotty rash that sometimes itches and sometimes doesn't, I'd love to hear what you did! I've had Rx anti-histamines, tried every OTC anti-histamine I can find, two different Rx creams, and just about every OTC lotion I can find for itch, diabetic skin, eczema, dry skin, sensitive skin, plus straight Vit E oil.

I am fortunate to have done so well for so long! I am tired and my brain is not what it used to be, but I still enjoy most of the things I have always enjoyed and I have great family and friends (and medical insurance!)

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Barbteeth

I think you are incredible and I’m so happy your consultation went well...he sounds great

As for the skin problem..have you tried aloe Vera gel or body lotion?.. just a thought..bet you’ve tried it but it is very soothing ..coconut oil is also very bland and moisturising but messy!!

Not much help otherwise

Barb XX

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PJBinMI
PJBinMI
in reply to Barbteeth

I've not tried aloe vera.....I'll get some later today! Hope I remember to let you know if it helps at all.....

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Barbteeth
Barbteeth
in reply to PJBinMI

It’s marvellous stuff..a friend of mine has the plant and just breaks a bit off and rubs the juice on her skin...great for burns as well

You can also buy the juice to drink and people swear by it..however I would check with oncologist first...just because it’s natural doesn’t mean it’s harmless

Reminds me of a friend..very health conscious who decided to drink liquorice tea throughout the day...felt unwell after a time..went to Gp..her blood pressure was dangerously sky high..makes you think!!

Barb xx

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girlsptz

Your long history with this disease gives us all inspiration to not let a setback throw us off our mission. You have certainly had some through your journey and also been very lucky that treatments have served you well for the most part. I am sorry about the lung issue and yes these drugs are toxic, approved by authorities for safety but still infants in the world of what side effects that may be caused with long term use. I certainly don't take them lightly but want to live and they are currently my best chance. I'm blessed to have limited side effects as well....fatigue being the common denominator with most of us. I'm sorry about that pesky rash.....frustrating I'm sure. Have you tried the old fashioned cure of spreading mushy oatmeal on it....I know not a pleasant thought but is usually effective. Keep up the great battle. I always enjoy your posts. Take care.

Sandra

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nstonerocks

Your post is inspiring and reminds me not to count myself out for beating the soft 10 year prediction my onc reluctantly gave me 5 years ago 😂 As far as the skin, a while back my legs and feet were drying up. I looked like Shrek and my feet were rashy and itchy. Some things helped, but the best thing I found was a lanolin salve with chamomile. I got it in Ireland on a sheep farm. It’s made by Lanolia and they ship from Ireland. They are not cheap, but you don’t have to use a lot. It was the most soothing, restorative ointment I tried. As long as you are not allergic to lanolin, try it. Alternatively, you might be able to find a cheaper version sold in the States. A little goes a long way and it lasts for more than a day on the skin.

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Red71

I’ve had an itchy rash that has been diagnosed as athletes foot but I get it anywhere on my feet, not just between my toes. I mix steroid cream and antifungal cream and put it on twice a day for a couple of days but it comes back every couple of months. My husband doesn’t get it and he’s the only other person in my shower and I don’t go to the gym. I also have the toenail fungus but lost the toenail after I banged it on the end of a chair...ouch! I was putting Vitamin E oil on my legs and feet because they were so dry so I put it on my toes too. The fungus didn’t come back when my toe grew back in. The podiatrist was quite amazed. The Vitamin E oil has really helped my all over skin condition. I put it on before I get out of the shower, except my feet. I put it on my feet right before I put my socks on or I’d be sliding all over the bathroom! I don’t think falling down is very good for those of us with bone mets🤣

Good luck with your rash. It’s always something! Elaine

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mariootsi

You are an inspiration! You give me hope. Your new onc sounds wonderful! Makes all the difference in the world to have that positive influence and so important to be able to communicate easily and comfortably.

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Bubbles001

Congrats on your longevity with MBC and thank you for sharing your story! I have a rash on my skin on my chest which was biopsied and turned out to be breast cancer that had metabolized there. They are seeing more cases of this as patients are living longer.

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nstonerocks

Geeze

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Rhwright12

Congrats on 15 years! So awesome to hear too that many of your treatments have last for a long time...😀💕

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kduck

You are truly an inspiration to us all including those of us with the same type of cancer and bone only. It gives us all hope to continue to do well and except life and enjoy it to the fullest. My onc tells me pretty much the same thing everytime i see him. Just to hear him tell me how good im doing means so much. He always tell me im going to be here for a long time to raise my children and watch them grow up. Thank you so much for every word you wrote, it brought tears to my eyes, thank you!

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PJBinMI
PJBinMI
in reply to kduck

Yeah, those of us who have bone mets only are really at an advantage. Being post-menopause at diagnosis is good, also. A good response to first treatment is hopeful, too. But there is still mystery about it, multi-valiant causes, and such individuality!

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NPmary

Good for uou.

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Mimigram

Sounds like you have lived a long time with MBC which is really great news for all of us. I have the exact same type breast cancer. Mine came back after 14 years taking no drugs. I started Ibrance and Letrozole in Oct 2018 after diagnosed with MBC. Have you tried cortisone cream 10%?

Mimi

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rubyc1234

Thanks for all of this. It is so encouraging to realize that MBC can be controlled over the long term. I have never had the rash but it is only my first year of having MBC.

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Kph1

Thank you for the encouraging message!

Such an inspiration,keep enjoying life xx

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Gibbsbet

how about Udder Cream.

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Francesca10

Thanks for your post. It is powerfully encouraging as there are so many unknowns with this disease. It is so good to hear 15 years!!!!!♥️

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LouisaMay

Hi PJBinMI,

Congratulations on doing so well for so long with this disease. You bring hope to all of us.

May I ask, do you follow any kind of special diet, drink alcohol at all, take any particular supplements? Is there anything in particular that you would say has helped you along the way? I'd love to know. Thanks and best wishes xxx

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PJBinMI

It's okay to ask me anything! I hope I can remember to answer everything you asked about. People do often ask me about diet and it makes me chuckle a bit. My grown daughter went with me and my husband when I got my first second opinion about a month after getting this diagnosis. My daughter has a friend who took some six week class about diet and thinks she's now an expert and she'd been giving my daughter all kinds of (extreme to me!) suggestions about what I should be eating and not eating. So daughter asks expert about diet, expecting some strict guidelines, and the expert, bless her heart, said "this is not the time of your life to be on a strict diet." My mother was an Adele Davis fan and we grew up eating healthier food than most families in the 1940s and 50s! And I have probably has less pop, food outta boxes, and fast food than alot of people during my lifetime, but I pretty much eat what I want to, including chocolate, cheese, milk, butter, and coffee for breakfast! I didn't drink any alcohol the first couple of years with mbc, but then one night we were eating speghetti, and I realized how nice a glass of red wine would be, and I started having a glass of wine or a beer with dinner several times a year. I've never been even a moderate drinker but I do like a nice Merlot or dark beer occasionally with a dinner that seems to call out for that. About supplements, since I have been on bone drugs most of the time since diagnosis, I have taken calcium when I think of it. I probably drink more milk than most my age and my calcium levels are always good. I have so many Rx meds I have to take every day that I often forget any supplements. I have been to a number of BC conferences, mostly those of the National Breast Cancer Coalition and the Metastatic Breast Cancer Network, and once the San Antonio BC Symposium, the biggest bc conference in the US, most attended by oncs, but other health care people and some bc advocates, which I am. A number of years ago, speakers were talking about cancer having elements of inflammation, and about that time I had a break out of eczema and my pcp had suggested that I take fish oil, turmeric (cumin) tart cherry juice, and glucosemin/chondrotin to reduce inflammation. I also had a somewhat swollen left ankle from a fall on the ice and broken ankle. I tried the tart cherry juice and turmeric and within 36 hours the swelling in my ankle lessened noticable. I have all those supplements on hand now and take them when I think of it, but less than weekly. So I really don't think they have anything to do with my longevity. I think it's most plain ol' dumb luck! I have taken my onc's advice about what treatment next when one fails and when it has been in pill form, I have taken them faithfully every day as prescribed! I have those plastic pill organizers on the counter in the bathroom as a reminder and so I can check if I forget whether I have taken my meds! lol I keep my doctors' appts and scan and lab appts and most of my doctors are now in the same system so they all have access to all my reports. I got almost five years from Femara (Letrozole), a non-steroidal aromatase inhibitor and close cousin drug to Arimidex. Then I switched to Faslodex and got over 9 years on it. I was on Ibrance for 9 1/2 cycles during year 7 or 8 of the Faslodex, but it is the med that did permanant damage to my lungs. And that led to some cardiac issues. Now I have been on Exemestane, a steroidal aromatase inhibitor, for over 1 1/2 years. I was on Zometa for several years and then when Xgeva came out, I switched to it for my bones. I was allergic to Zometa and had to have premeds, extra fluid and a long infusion time plus a half dose of it to tolerate it at all. I do have more bone mets than when I was first diagnosed but I have never had pain from any of them, so I am really lucky. I am now older than my mother was when she died and older than her parents, too. My dad's family is very long lived with people living into their 90's and 100's for as long as my dad went back with geneology. So.....I'd saved money to support myself at least to 100 and I am fortunate to have really good insurance so that is one worry that we don't have. I think we've spent more on vet bills this year than on our own medical bills, crazy as that sounds! I do find humor where ever I can and I have always been an optimist. I don't think that has helped my longevity but it sure helps my quality of life! We live in the country on ten acres that's most woods and where there are deer and other animals that never came around when I lived in town. I enjoy that alot, though the deer do eat some of our plants! My husband retired a few years ago and that has gone really well. He is busy out in his workshop alot of the time and he and his brother just finished restoring a 1948 Chevvy pick-up truck. I get a kick outta how much fun he has with things like that. We are down to just one dog and may not get another, though they have a way of coming into our lives. We have 7 cats right now, all of them have just shown up though two are the daughters of a feral cat that we fed for over a decade until she died this past winter. We have a pet cemetery in the woods near our house and I found a great small statue of St. Francis that we put out there and that I enjoy seeing. So--that's my story! I would probably write it differently on another day, or maybe even in an hour! lol I do enjoy writing and was an English major as an undergrad. My spelling is pretty bad and for some reason spell check stopped working. I am going to stop now.....

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