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Bad petscan results

My3girls profile image

Petscan shows cancer has spread significantly, but is still just in bones. I have been on generic xeloda for 3 months apparently its not working for me. I was on ibrance & fasoldex before that and tamoxifen & zometa before that, and chemo, mastectomy & radiation before that. Now my doc wants to put me back on iv chemo to get things under control. I lost my hair the first time 3 years ago with chemo and i was ok with it because i knew it had to be done and after 6 months my hair would grow back. This time there's really no set time thst i will be on chemo, just until it no longer works and I'm really struggling with losing my hair again and maybe not getting it back.

36 Replies

My story close to yours. different drugs. In 09 lumpectomy,Chemo, radiation and then arimidex.. 2014 tumor on vertebrae wrapped around spinal cord. Surgery to remove and stabilizer plate between vertebrae. faslodex shots every 4 weeks and xgeva every 3 months. Taxol left me with neuropathy in fingers and feet.. I have been on oxycotin since surgery. spots found this Apr. Radiation caused more pain instead of relief. Disruption to nerves from breaking up of tumors?? My hands shake and numbing and tingling waist down. So next prednisone 20mg daily. i have only done 2 cycles ibrance and lesterole. Numbers very low and on my 2nd week off. my next option chemo too. Hair loss is hard to take. Hopefully it will be temporary. I'm sorry this is your next option and that we are running out oral dugs. I am hoping the best for you. I could be in same boat if my numbers don't improve. Good luck to us all.

I have a very similar story also, I refuse to do IV chemo ever again, I am now on Afinitor and Exemestane. I will have to say losing my hair was the least of my worries, it's my quality of life. I have heard there is new IV Chemo that is not as harsh as the old stuff and you don't lose your hair, you may want to ask your doctor about that. I have bone and liver mets and have tried every drug you have. If you want to try another oral drug the Afinitor and exemestane seem to be working for me. It's so hard! Praying for all of us to be able to deal with this horrible diagnosis.

I'm where a lot of you are. After initial diagnosis and 12 surgeries and 2 chemos I went on Femara. Diagnosed stssge 4 jiily 2017. Went on Ibrance, Xgeva and Faslodex. It spread faster. In all my torso bones. Was put on Affinitor and Aromasin in February. Had pet add can Friday. Dr is sure it's still spreading. He wants a port in and chemo. I don't want to go there again. That is not quality of life. Nothing is working for me. I may get kicked off of here for saying this but the pharmaceutical companies are making a lot of money. They are advertising new medications for everything. I firmly believe if they wanted there could easily be a cure for certain types of cancer. Just my opinion. I'm praying for all of us and sorry about your results.

Snowcone16 profile image
Snowcone16 in reply to Selmac

My husband received a call today from a salesman selling these bracelets that seem to be popular. The salesman mentioned he started to use the bracelet when he got nauseated from cancer treatments. He even said at some point they thought his cancer spread because scans showed it all over. But, he said that was because the primary site had gotten broken down. Anyway, he said he is NED. He suggested I read “outsmart your cancer”.

I’ve done lots of reading...most recently Spontaneous Healing. Anyway, I ordered the book.


blms profile image
blms in reply to Snowcone16

ARe bracelets magnets?

Snowcone16 profile image
Snowcone16 in reply to blms

Honestly, I’ve heard mixed reviews. The bracelets is by EFX and mainly says it improves balance, energy and I guess athletic performance. However, a number of people say it helps w nausea. And some make bigger claims although studies say it could be placebo effect. Either way, it was strange that I have been experiencing nausea. Then my husband received a call because he had been researching it online. Interesting enough, the salesman shared how he had cancer. I’m not sure what kind. He had experienced nausea and said this was a huge help. Then my husband told him about me. The salesman talked about books he read and supplements, protocols he followed. It’s a $30 bracelet so I don’t think it’s big commission.

But I’m open that God sends me messages of hope. And so I ordered the book from Amazon and a bracelet. Maybe I’m crazy but I don’t think it was coincidence. ❤️

blms profile image
blms in reply to Snowcone16

I truly don’t believe in coincidences. So go for it! I’m on the same page as you in thought and spirit!

But have you tried acupuncture for nausea? Works really well for Odin and nausea, BUT find a Chinese doctor trained in mainland China for treatments

Epinto profile image
Epinto in reply to Selmac

I agree that the pharmaceutical companies r making a fortune and I find that it is difficult to trust the health system. Problem is that we r at the mercy of the drugs!!!!

Snowcone16 profile image
Snowcone16 in reply to Epinto

I’m with you on skepticism w pharmaceutical. I just try to complement that approach w good mental attitude and supplements. 🤗

Kimlane profile image
Kimlane in reply to Selmac

I feel you. It is a money maker for them. I'm curious how your onc reacted to you stating you wouldn't go on I've chemo again. my story is similar. Dx 2000. Bilateral mastectomy, AC/Taxol, radiation, femara. TM up drastically in 2014. After too many scans, dx with MBC to peritoneum. Been in Xeloda for 12 months. Looks like it may not be keeping me stable anymore. Not sure if I can face the port/IV again.

Selmac profile image
Selmac in reply to Kimlane

My Oncologist wants me to keep going but he also said it's my decision. He tries to make out the side effects aren't as bad as they are. My husba nd doesn't want me to quit, but understands when fighting longer to lay in bed and be sick all day isn't worth it.

I am curious as to if any of you have your blood glucose levels checked. I was diagnosed as being a borderline diabetic in 1976. I had the 8-hour testing which they no longer do. The 3-hour testing misses the diagnosis. I decided on my own to get Metformin and started taking it June 28th. A week later a skin cancer on my stomach went away. I had to cancel the appointment to have it removed. I have bone mets and got liver mets after going on Fluvestrant. That and Ibrance did not work for me. My dr. did the blood test and told me that both drugs should have worked. I told him that I think the reason they didn't work is because I am a borderline diabetic. When I saw him two weeks ago while going over my scans, he was pointing out my three liver mets. Then a few minutes later, we went back to them and he was surprised telling me that one of the mets looks like it may be dying. I asked him how he could tell. He said that the inside of the cancer cell will turn dark and a white line will form around the cell. He then said, "This one is darker and it's already starting to draw a broken white line around the cell." I had been on Metformin a month at that time. I have read an article that said that they think there is definitely a connection between diabetes and cancer. Most doctors are not aware or they choose to ignore it. I also read that if you are diabetic that you have a 23% higher chance of getting breast cancer. Also especially if you have diabetes in your family, you need to investigate this. New York Times in England, June 23, 2019 stated that Metformin is now being used for breast cancer and liver cancer.

Not liver cancer, but lung cancer. I am tired. Hope this info can help!

Hi there My3girls

How much Xeloda were you on?

Sorry to hear you are having such a difficult time. I was on Xeloda 2500mg a day for the first 6 months then my medical scheme changed the script to a generic but it all worked fine for 11 months. Any odd fluctuation in my markers were more or less ignored by my oncologist as she tends to believe the scans are more accurate and the Xeloda needed time to work. Then I had progression to my liver met. Like you I had a mastectomy and radiation for er+ cancer in 2013 and was then put on tamoxifen but after 3 months I had a really bad couple of days and was given a CT scan which showed up a small liver lesion (less than 1x1cm) and was told basically that this was stage 4 and no cure was available. Thereafter I was on Letrozole for almost 4 years and though the Ibrance choice is not available to me on my medical scheme the Letrozole worked well till my routine scan in November 2016 showed a sudden increase in the size of the liver lesion. Xeloda kept it in check for about 10 months then the markers climbed and the next scan showed the lesion had now grown to some 6x4cm. Now the problem was that my oncologist was not comfortable with upping the Xeloda as my hands were beginning to show signs of hand-foot syndrome with hard peeling skin on the forefingers and thumbs (had very little trouble till that point) so we tried 3 months on Navelbine and another 3 on Faslodex - and the lesion grew again! Unfortunately I have run out of "friendly" options now as some of the combinations like Ibrance are not supported by my medical scheme and I certainly cant afford the price they charge here (I am 73 and a pensioner). Currently as I have no symptoms other than scan results and rising blood markers my oncologist has taken me off all treatment on the premise that I should enjoy my current quality of life as long as I can because tough chemo seems to be my only option now and that will impact on my life whether I like it or not. Like you I am struggling with the notion of undergoing chemo till it stops working, hair loss. nausea, fatigue and all that goes with it. Some say I am crazy not taking the chemo now while I am fairly well. I am not so sure!

Hope you will find a suitable treatment and if that is chemo it wont be too taxing.

MMMP profile image
MMMP in reply to

I totally agree it's all about quality of life and I'm not going back down the IV chemo road- you are never the same again -on xeloda for past 2 years now numbers starting to rise- it's a waiting game- labs in 2 weeks!! Just going with the flow-

My3girls profile image
My3girls in reply to

I was on 1500mg in the morning and 1500mg in the evening also got faslodex inj once a month. But the cancer grew like crazy the last 3 months. I ask My oncologist about maybe trying verzenio and she said we'd talk about trying it after we get it under control with abraxane. I still have a 13 year old at home and i've promised to do whatever i have to to see her graduate. So for now i guess chemo it is. I hope you are doing well and able to do all you want to!

MissyAnn68 profile image
MissyAnn68 in reply to My3girls

I have heard the iv chemos are less harsh now. I hope that’s the case for you. Do some research and ask others who have been on it.

Kimlane profile image
Kimlane in reply to

Wow. This is me to a T. Thanks for sharing

I have had a similar journey with treatment when I was initially diagnosed stage II in 2013 and then after I was diagnosed stageIV in 2016. I progressed on Xeloda in 4 months. I just completed my second cycle of IV chemo (Doxil). No hair loss expected it is not as harsh as the original chemo. The other chemo option was taxol which I had originally, could cause hair loss. In discussion with my dr she seemed to indicate that we could do either chemo option and ultimately decided Doxil was way to go. Do have fatigue and can lead to Hand Foot Syndrome which I had significantly when in Xeloda. You can also explore if you can use cold cap or dignicap to prevent hair loss. Some centers are now offering and helping with costs. I did the penguin cold cap with my initial chemo. I had to cover all costs. I only lost about 50% of my hair. It is a commitment but something you can explore. Sending a big hug your way

My3girls profile image
My3girls in reply to harriet91

Dr us wanting to put me on abraxane? I'll ask about the doxil. Thank you

My3girls profile image
My3girls in reply to My3girls

Just looked up the doxil,

I had that in the first chemo coctail they gave me.

harriet91 profile image
harriet91 in reply to My3girls

Yes, I had it too when initially diagnosed with stage II, in the harsher AC version (as well as Taxol) What I am receiving now is a “water downed” version. It is admin via an IV drip vs syringe.

Do you get Xgeva shots? Xgeva stopped my bone Mets in their tracks.

I have not had xgeva? Is it similar to zometa?

Are you HER2positive? Women do quite well and tolerate it well on that drug and it does shrink cancer well. I am with you on Taxol IV. I really don't want to have to take that again!! It is all tolerable if you know there is an end to the IV treatment. Herceptin is on going but I do hear good things about dealing with it and do not think it is like the old chemo I had.

My3girls profile image
My3girls in reply to blms

I'm HER-

This is the worst. It’s one thing when there is an end in sight but for us there is none. We have to keep enduring treatment after treatment until we have no more options. I wouldn’t wish this on my worst enemy! I am going to start on Xeloda. Im scared of side effects but i have to use something. Did you have all the side effects?

I really didn't have any sides effects from xeloda besides being a little tired and my hands would get a little sore the last few days of the two weeks. I wished it would have worked for me because i felt the better on it thsn any other treatment. I did make sure to keep my hands and feet moisturized while taking it.

Hope it works for you for a long time!

I hope i have the same results. I really need this to work because doing iv chemo is not on my list of things to do. It annoys me that everything stops working after a while. I’ve been on ibrance with fulvestrant and i was feeling great then suddenly it just stopped working. Very frustrating because the last thing we want is horrible side effects. I hope whatever choice you make gives you results with the least amount of side effects.

in reply to MONICAGELLER409

I feel like you - everything seems to have a working life! I replied re Xeloda to My3girls - I used it for 11 months and was very happy on it barring a little skinning on my index finger round to my thumbs. however my oncologist seemed to think that when some progression was noted, a stronger dose was not a good idea looking at the palms of my hands?? Pity as it really was a comfortable drug for me. Tried Navelbine then Faslodex over a period of about 7 months but progression continued and, as my Medical scheme does not have Ibrance or similar types of medication on the formulary at all or not for my plan (too expensive here) I have no recourse now but chemo of which I am terrified! Fortunately I am asymptomatic (my mets are on my liver and one node nearby) and with the oncologist's blessing I am not on any meds at all till I begin to feel bad enough to reconsider.

MONICAGELLER409 profile image
MONICAGELLER409 in reply to

Oh my goodness Izzy, I am so sorry to hear that. I wish you could take iBrance. I been on it for a year and now it stopped working but it was great. Virtually no side effects. Just keeping an eye on white cells. I took it with fulvestrant. Chemo is very scary. I don’t want it either. Im doing the oral and hope it works. If not it will be you and me in the same boat. I have met in bones liver kidney lungs nodes. Basically a mess! But if im gonna be sick as a dog laid up in a bed, I’d rather be dead as that is not living. That is merely existing. Long term chemo would be horrible. Let’s pray we both do better than anticipated.

in reply to MONICAGELLER409

My feelings exactly, Monica. Some say that is defeatist but I have spent years enjoying camping in the Kruger Park and gardening in my patch at home and to be unable to enjoy these things anymore makes me dread the idea of continued existence. Also my sister who lives with me, has spent so many years looking after older people in their homes in UK, and my mom when she became a bit frail (she is a nurse and specialised in midwifery but had to leave Zimbabwe when work became unavailable) I really do not want her devoting the rest of her life to caring for me! It is a difficult question and all the reports you hear about chemo do not give one much encouragement if one may be on it long-term! Lets just keep on hoping and live as best we would like.

Good luck and hope you do well

MONICAGELLER409 profile image
MONICAGELLER409 in reply to

I’ve already given up so many of the things I used to love. Like hiking, dancing, running etc that i already feel cheated. I go about everyday slow as a snail thanks to a tumor that is blocking my airway, but i am grateful that even at a slow pace i can get around. No way do i want to lose that bit of freedom and living. My internal voice when i get opinions from others about how i should take chemo and fight says...shush! Until you have to live this, do not opine. My external voice says...yes of course. In the end it’s my decision and i want to live and not be a burden to anyone. Do you still garden? I’m a city girl so I’ve never gardened but I sure do think it’s fun and rewarding 😊

in reply to MONICAGELLER409

Tough about the airway - I am so sorry. That must be wearing but, as you say, while you can still get about, however slowly, it is cause for some joy. Like you, my opinion is ultimately what matters most to me regarding my ongoing treatment so prefer uninformed folks to keep their advice, however well meant, to themselves. Just had my 3-month visit to oncologist - blood counts still going up regularly but still no obvious symptoms - as she says, without counts and scans we wouldn't know I had cancer! So I shall continue untreated till discomfort reigns.

Yes I do garden. We grew up on 2 acres in Zambia and later Zimbabwe with a very keen rose gardener for a mother! My first property here in South Africa had a postage stamp for a garden (I still managed 40 roses - in pots as well as ground!) so when we decided to buy here in the Lowveld I wanted a garden and eventually ended up on a nicely manageable 600sqM where I can grow all sorts of more sub tropical plants, aloes and succulents and a small veggie garden from which we get tomatoes, beans, leeks and carrots all year round.

I find the exercise required to mow, dig, prune etc does give me some much-required movement but would like to be able to do more walking (too much arthritis in my ankles) or yoga or something too. They do say exercise is a help both mentally and physically.

All the best and keep in touch with this great site - it really helps

I’m sorry about your airway! Is there any radiation treatment as short as possible? Or because it’s causing breathing problems can’t they remove it. I mean I know we have Mets but you should not have to not be able to breathe! I have plural fluid and even though it’s small if I overdo it I can’t catch my breath for a min and it’s scary. I hope they can do something for you and I will pray for you!🙏🙏🙏💗💗


Radiation is not an option as the location is too dangerous. I do everything slowly and avoid fumes - so far I’m managing. I’ve made adjustments. When it started I would freak out from not being able to catch my breath. It is VERY scary!

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