Go Forth...and live your life!
LoisLois
Member Posts: 43 ✭
Hi Everyone,
It has been a LONG time since I have been back online. The past few months have been one hell of a road trip indeed.
The months away have been spent, trying to get through numerous rounds of chemotherapy, each one systematically throwing endless side effects that eventually took their toll on my health. I spent a fair bit of the time crawling my way from bed to bathroom with months of diarrhea and having a good cry session at how "crap" my life had become (pun intended). I had several trips to the hospital with chest pains that had the doctors pretty concerned, only to realise my body was rejecting the chemo but I persevered till the end.
I THINK the doctors thought telling me "Wow, we didnt think you would survive?" was somehow reassuring - ah that would be a negative!
Thinking I would get hopefully some sort of break between chemo and radiation was delusional. 3 weeks after finishing chemo, I was laying on my back, topless getting zapped for 6 long weeks. My skin handled the radiation exceptionally well, until 8 days after the last dose, I woke to horrendous pain, the loss of the use of my left arm and covered in about 400 blisters from mid torso to my neck and around my side.
I discovered I was highly allergic to the flamazine cream, which created huge open ulcerated sections and I looked like I had been baking myself in a 3000 degree oven. Thankfully, all is healed and I am back to looking "normal".
The energy levels are still low, the metallic taste is gone, I can no longer look at a Pork Chop without throwing up and ice blocks are still my favourite go to food! I still need the odd afternoon nap, however one good thing has occurred - I have lost over 11 kilos and feel happier.
I must admit, the visit to the Oncologist to begin the next step in life - "what tablet shall I swallow each day?" brought some very interesting information that had previously been unspoken by the medical team. It is amazing when a new doctor takes over from the old one and inadvertently informs you some facts that had been kept VERY quiet, in fact I think the C.I.A. would have been impressed by the secrecy....it has made me wonder whether the rather blase comment of "Go forth and live your life" uttered by the Radiation Oncologist was a standard routine comment, so they can sign you off the books?
When the word "IS" is uttered and not "was" when talking about my BC, made my eyebrows raise.
Anyway, while I wrap my head around the sheer fact that I have surprised my medical team by actually surviving - no, I am not joking! They seemed to take great joy in telling me that over and over. I am trying to get my life back into some sort of actual semblance of activities that dont evolve around the word "Cancer". Slightly hysterical in actuality considering that has been the number one bloody owner occupier of my life for the past 12 months!
By the way - Letrozole (Femara) seems to be the chosen tablet for the next 7 years of my life. I have been researching the side effects and I seriously hope and pray, my body along with its constant companion LUPUS, doesn't resort to throwing every single one of them at me! I am to be honest, dreading it.
If you have managed to get this far......I have a question - has ANYONE REFUSED to take the medication and if so, how has it affected you??
I am asking merely to give myself various options so when i see the Oncologist - I go armed with information and not merely accepting their word as gospel. I have learnt over this past year, as much as I wanted to hide my head - I cant and couldn't. I needed to know what I was up against and also in some cases have serious discussions as to alternatives with the Medical team.... just so i could survive.
So for the next few months, while I do the routine scans, tests, bone density, teeth check and wait to see the Oncologist again - I am looking forward to welcoming my third grandchild into the world (our first grand-daughter), see my beloved friend get married to the Love of her life and spend time swimming before the cold once again hits us.
Life is sweet....hectic but sweet. I can now enjoy simply being LOIS once again....
Big hugs and thank you for reading this!
Lois
It has been a LONG time since I have been back online. The past few months have been one hell of a road trip indeed.
The months away have been spent, trying to get through numerous rounds of chemotherapy, each one systematically throwing endless side effects that eventually took their toll on my health. I spent a fair bit of the time crawling my way from bed to bathroom with months of diarrhea and having a good cry session at how "crap" my life had become (pun intended). I had several trips to the hospital with chest pains that had the doctors pretty concerned, only to realise my body was rejecting the chemo but I persevered till the end.
I THINK the doctors thought telling me "Wow, we didnt think you would survive?" was somehow reassuring - ah that would be a negative!
Thinking I would get hopefully some sort of break between chemo and radiation was delusional. 3 weeks after finishing chemo, I was laying on my back, topless getting zapped for 6 long weeks. My skin handled the radiation exceptionally well, until 8 days after the last dose, I woke to horrendous pain, the loss of the use of my left arm and covered in about 400 blisters from mid torso to my neck and around my side.
I discovered I was highly allergic to the flamazine cream, which created huge open ulcerated sections and I looked like I had been baking myself in a 3000 degree oven. Thankfully, all is healed and I am back to looking "normal".
The energy levels are still low, the metallic taste is gone, I can no longer look at a Pork Chop without throwing up and ice blocks are still my favourite go to food! I still need the odd afternoon nap, however one good thing has occurred - I have lost over 11 kilos and feel happier.
I must admit, the visit to the Oncologist to begin the next step in life - "what tablet shall I swallow each day?" brought some very interesting information that had previously been unspoken by the medical team. It is amazing when a new doctor takes over from the old one and inadvertently informs you some facts that had been kept VERY quiet, in fact I think the C.I.A. would have been impressed by the secrecy....it has made me wonder whether the rather blase comment of "Go forth and live your life" uttered by the Radiation Oncologist was a standard routine comment, so they can sign you off the books?
When the word "IS" is uttered and not "was" when talking about my BC, made my eyebrows raise.
Anyway, while I wrap my head around the sheer fact that I have surprised my medical team by actually surviving - no, I am not joking! They seemed to take great joy in telling me that over and over. I am trying to get my life back into some sort of actual semblance of activities that dont evolve around the word "Cancer". Slightly hysterical in actuality considering that has been the number one bloody owner occupier of my life for the past 12 months!
By the way - Letrozole (Femara) seems to be the chosen tablet for the next 7 years of my life. I have been researching the side effects and I seriously hope and pray, my body along with its constant companion LUPUS, doesn't resort to throwing every single one of them at me! I am to be honest, dreading it.
If you have managed to get this far......I have a question - has ANYONE REFUSED to take the medication and if so, how has it affected you??
I am asking merely to give myself various options so when i see the Oncologist - I go armed with information and not merely accepting their word as gospel. I have learnt over this past year, as much as I wanted to hide my head - I cant and couldn't. I needed to know what I was up against and also in some cases have serious discussions as to alternatives with the Medical team.... just so i could survive.
So for the next few months, while I do the routine scans, tests, bone density, teeth check and wait to see the Oncologist again - I am looking forward to welcoming my third grandchild into the world (our first grand-daughter), see my beloved friend get married to the Love of her life and spend time swimming before the cold once again hits us.
Life is sweet....hectic but sweet. I can now enjoy simply being LOIS once again....
Big hugs and thank you for reading this!
Lois
Tagged:
6
Comments
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Sorry Lois. I can't help you with your Femara but I just wanted to say it is good to hear from you again and hear things have improved. What an awful time you have had of it. Medical personnel can certainly keep us in the dark which is very annoying, My GP use to tell me everything which is great as the onco team certainly didn't.
You need to ask your onco what the benefits are of taking femara and how will they decrease the chances of cancer returning. My biggy was radiation which the radiologist insisted I needed but it didn't reduce the chance of the cancer returning. I politely told him no thanks even though he was pushing it rather forcibly. You do what is right for you and what you won't have regrets for later. You may not have any side effects from Femara and they can change it to other drugs if your body can't tolerate it. Decisions when our brains are not functioning well are never easy.
2 -
Hi @LoisLois,
I am at the other end of the 7 years of hormone therapy. I didn’t have any other health issues to deal with and while chemo and radiation were not easy, I certainly didn’t have as tough a time as you have had with active treatment.
I started off on Tamoxifen for 2 years, then had my ovaries removed and switched to Femara, then when side effects got too much after 3 years of that, my oncologist changed me back to Tamoxifen. I think it really helped that my oncologist always listened to my list of side effects, explained the difference that hormone therapy might make to my chance of recurrence, but made decisions to change things when she could see the balance was getting out of wack. The balance between chance of cancer recurrence benefits vs other health issues and quality of life is important.Originally the aim for me was 10 years of hormone therapy but my oncologist called it enough when I saw her a few weeks ago. I am glad that I got through those 7 years for my chance of recurrence and really glad that I had an oncologist who looked at that recurrence vs quality of life balance. You can always give it a go and see how you tolerate it and how it effects your other health issues. A good oncologist should be able to make changes to keep that balance right for your situation. You can only do what your unique situation allows. Wishing you the best of luck with whatever works out to be the best for you. Take care.
Deanne x4 -
Dear @LoisLois
I can only echo what @Deanne has said. I’m in my 8th year of Femara and while I have had some side effects, I have had no bone or joint pain. Vaginal dryness yes, tried a pill change to no good effect and my breast surgeon very carefully walked me through medication that has helped a lot. I carefully monitor my bone density - it’s reduced but it was very good to begin with (and I am getting older!) so I have some wiggle room (good that you will get it checked). You can always change or even stop taking an AI, so worth giving it a try if your oncologist thinks it’s important. I know my oncologist wants me to go for ten years, but he too understands that trading for osteoporosis is not that attractive an option!
Congratulations on your new grandchild - these are important reminders of how precious life can be.2 -
Gosh @LoisLois - what a time you've had of it! GO GIRL! You are a superwoman, proving them wrong! What a shame you were allergic to that cream!
I didn't have chemo (but watched my husband go thru it 11 years ago & he is on it again currently as I type )
Absolutely - what @Deanne and @Blossom1961 said. I hope you have a good Onc who listens to your concerns and tells you the truth - do NOT be afraid to change Oncs if you feel you are not being listened to. I did. My current Onc is lovely and right up with the latest trends (and is treating my husband too.)
Don't be afraid to change your meds, as Deanne did ..... I'm on my 3rd lot now - Tamoxifen is about the only one I haven't tried!!
I had radiation then straight onto Letrozole. Coming from an arthritis background, sadly, Letrozole gave me bad side effects almost immediately & only lasted 6 weeks & after my first Onc didn't believe me, I saw his stand in (then his replacement) who put me onto Exemestane. I lasted 6 months on that before the levels reached the Letrozole ones ..... so am now on Arimidex for 2.5 years and am coping just FINE - still a bit achy but nothing extreme! (Tho I AM taking some magic oil as well, which I believe takes the edge off the side effects!)
In answer to your question - yes, some members have stopped treatment. I considered it seriously when I was having the bad side effects, as the perceived 'benefit' to increasing my 'survival' was only 2-4% .... I was wondering if it was worth the discomfort & pain? But when push comes to shove - most will continue taking them, I think.
I have a chart of side effects that I can give you (with many added side effects by members here) - but it is probably better to start your meds & wait & see if you are affected, to 'give them a chance' before checking them out! You can also take a 'break' from the meds to give you a chance to bounce back, if the side effects ARE bad - if you want to stay on that specific one?
All the best with your Onc appts & meds - make sure you record it on your phone so that you can go over it again later ...... I often print off my questions and give them a copy (and take notes on my copy) so then you know all your questions have been addressed
take care xx
1 -
Hello Lovely Ladies,
THANK YOU SO MUCH for answering my question. In the past couple of weeks, I have done some serious research and as much as I hope and pray that the side effects are small, considering how the Lupus was in full flare up the entire time during the treatments, I do not think it is going to give me a break.
On a positive note, I have just had the mammogram / ultrasound done yesterday - just in time to meet with the surgical team on Monday to discuss removal of the right breast. It had been discussed back in September, however due to all the problems i was experiencing it was delayed until now. I am hoping he says "Lois, its time to say goodbye!" I can assure you all, I have NO issues with that and to be honest, it will be a damn relief. Having a 22E boob hanging off your side causing lopsidedness and immense neck/back pain for the past year has not been pleasant. It has been pure frustration to say the least. I am ready - pure and simple.
I am glad to know that I can ultimately stop it if I choose to but like you have said - I wont know if I dont give it a go. I meet up with the Medical Oncologist on the 15th March, so that will be an interesting conversation. As my kind of BC is in the doctors words "super nasty aggressive" - my initial survival rate was 10-15%. Initially, I was informed the radiation offered was to help out a bit. Not fully understanding at the time what she was implying until it clicked - I went into complete and utter shock. That number has now been hanging over my head along with the question which NOONE wants to answer - has anything changed with the chemo and radiation? The only thing the radiation oncologist told me before telling me to "Go forth and prosper" was all the scans are clear - so far.
I came home from that appointment both jubilant and a big question mark posed over my mind....what happens next? How do you stop thinking about the one thing that has been a constant 24/7 companion? Does anyone ever get over the fear of recurrence?
Anyway - a truly pure joyful moment in my life yesterday - my 2 year old grandson came and snuggled into my lap and called me "Nan - Nan" for the first time. Until that moment, Blake had persisted in calling me "Ma". Then reached over to his mother's very pregnant belly and said "Baby" - the first time he has said it. Both Eliza and I sat there in awe.
On that note - have a fantastic weekend and to my dear friend @Locksley - I hope Charlotte's 21st is amazing!
Big hugs and Love
Lois.
@arpie - did the doctor need to sign off on the magic oil script??? I am wondering if it will help with the extreme aches and pains caused by the LUPUS attacking my muscles and bones?5 -
