Starting chemo Sept 05
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Susan, I generally posted on the "starting chemo in August 2005 board, but we are all finished and few postings appear now. I have almost the same "anniversary" as you - June 6 mammo and biopsy, July 6 surgery. I have also thought about how to mark the day, but decided not to do anything, I certainly don't feel like celebrating that it is a year later (too apprehensive about the future).
Happy mother's day to all, hope it was a good day generally to mothers and non-mothers.
Linda -
Still not a brilliant photo, but it's a start. Can't really see much of my hair as it is so light, but we are getting there. I keep trying to make it spike on top but it just won't stay where I put it.
Sandra from the UK -
Hi everyone
Sandra- love the new pic and your hair! Oooh I am jealous.... :-D
Hmmm, the upcoming "anniversary"..... I don't think I will be acknowledging it at all to be honest. It is all still waaaaay too painful for me however I am hoping I will be on my way to NED which WILL be cause for celebration!
I am doing it a bit tough today ladies and really needed to come here tonight to just ramble. Skip this post if you are short on time! lol!
This chemo combo is really affecting my immunity like nothing I have felt. I ended up in hospital AGAIN today, this time with fevers, sore throat and aches and pains. They wanted me to stay in for a few days on antibiotic drip but I dug my heels in and said no, I wanted to try oral antibiotics first. Thankfully my bloods came back not too bad and they have agreed (for now).
Every week at the moment I am in hospital and I am really hating it. Even my bc nurse suggested talk to my onc regarding my "quality of life" issues. But doesn't that mean I am giving up?? I am not ready to stop chemo, far from it and I can honestly handle all the illness, etc if I KNOW this is working and perhaps even how much longer I have to go for this before I get a break. I don't even want to swap chemos if this is getting any kind of results so am a bit hesitant to bring up quality of life stuff in case he gets the wrong idea. I mean, in my opinion there is little to nothing he or anyone else can do to help my immunity. It is one of those things that come with it. But damn it is hard.
Relationship issues are rearing their ugly head again as well which is making it even tougher.
On another note, kids and puppy are all well. Still trying to toilet train this dog though! Ugh!! The kids are still in love with him thankfully...
Welll that is me. Sorry for my depressing post. I actually thought I had more to post but am even too sick of everything to do it!
love to you all
xoxo -
Hi Leanne,
My thoughts are with you tonight and I am praying for extra special strength for you, even though you are a very strong woman. Extra strenth never hurts!
Part of why it is so hard is the "unknown"....I really dont like the "unknown"! And BC at any level pushes us into this area.
I'm with you, have them find just how the particular regieme you are on is working well before anything else is decided or tried.
I pray for your husband too, that he may have a huge change of heart and you two would be able to support one another again.
Tonight I am up at 4AM having had the "bright idea" to stop taking my Ativan "every night" in order to sleep. And now it is too late (or early) to take it!
I guess I will have to go back to it for a while until I feel better. I guess it takes more than a few months to recover from all we have been thru.
I am glad you have the kids and puppy there to distract you in a nice way! I only have the two cats and husband and he is at work most of the time.
It is unusually hot here in Oregon, 92 yesterday. My eyes are itching from allergies.
Remember we love you Leanne and you are not alone. We are fighting along with you in various ways.
Love, Barb -
Sorry for the long absence have been having some technical AND personal issues to deal with. My surgery to remove the lump is scheduled for this Thursday. My surgeon, oncologist, and radiologist are still leaning towards this not being anything to worry about but I will be glad to get the official results. A big thank you to all of you for your support during this ordeal. This is NOT how I wanted to be spending my 1 year anniversary of when this all began .
Sandra Congrats on the Herceptin! I love your stories about the grandsons. The story of the tent made me smile. I hope they know how lucky they are! OK still curious about the What Not To Wear question make sure to fill us in!
Peg great news on the skin spots! Thanks for sharing your outing with us. What a wonderful experience!
Leanne you are always in my thoughts and prayers. I am so sorry that you are still dealing with so much. God Bless.
Susan I know that we were pretty much on the same schedule through all of this. I will be thinking of you when the Anniversary approaches.
Tina - I hope the remainder of your tratment goes smoother for you!
Barb - it absolutely takes more than a few months to recover from all of this. I finished chemo last October, Rads in December - and I'm STILL recovering. Take all of time you need.
Take care ladies. I will keep you posted about my results. -
Leanne,
I read your posting this morning, and found myself drawn back to the site to respond. [Warning: this will be a long post!] I believe that I told part of this story during a decadron-inspired posting, but I am way too lazy to go back and look.
When my sister Margaret was 28, she went in for a laproscopic gall bladder operation to remove some stones. This was mid-March, and a run-of-the-mill hospital in Atlanta, GA. The surgeon saw some odd looking tissues as he headed to the gall stones, and took a sample before moving on with the scheduled surgery.
The tissue sample was then sent to the pathology lab who deemed the cells to be something bad, but they had no idea what it was. The tissue was then sent to the Mayo Clinic [very highly regarded hospital in Minnesota] where again, they could not identify it, but declared the cells to be malignant, and due to my sister's age, probably Hodgkins lymphoma. From there the tissues traveled to the Dana Farber, where they determined that this was a t-cell lymphoma, the most aggressive version they had ever seen. Why was this diagnosis so hard to get? Because NO ONE had ever seen the cells this early on. T-Cell lymphoma, of this variety, is generally only found during autopsy.
This diagnosis was given to her on April 1, April 6 she and my brother had all her possessions in a truck and were headed north to Boston. The night of April 7th she stayed with me in North Carolina, and was having trouble breathing. By April 14th, she could no longer walk more than 3 feet. That is the day that she had her first meeting with Dr. Shulman [or God in our house.] Just a month after finding the odd cells, she had tumors the size of grapefruit everywhere in her abdomen, both above and below the waist line [which turns out to be an important medical distinction.] Dr. Shulman gave her a 0% chance of survival, but if she could pass some tests, there was a phase 1 study. They were going to include 24 people, if they could find that many and test the new White Blood Growth Factors. Dr. Shulman thought that he could give more chemo, if he could control the white blood cells.
Sound familiar?
And so for the next six months, she was given huge amounts of A/C, and white blood growth factors. She was really sick. Of each month, she was in the hospital for about 3 weeks. She caught every infection known to man. She vomited. She lost 45% of her weight. And NO ONE ever suggested that she review her quality of life. She was 28 years old!!!!!
The scans are the key. You need to know if the chemo routine you are on is working. Is there any way they can schedule those earlier? As you know, there are women with mets who are living for years, and you should be one of them!!!
To finish my story, Margaret just passed her 15 year survivor mark. The cancer treatment changed the course of her life of course, no children, lots of scars, etc., but she is alive and has a full life. You deserve nothing less.
Lots of thoughts, good wishes and tender hugs,
*susan* -
Susan,
I love success stories, thank you for sharing that one.
Leanne,
my whole family is praying for you.
You hang in there, you hear me? When do you get results of your scan? I am totally counting on you to respond to treatment!!!!
Is there a possibility for a second opinion?
I hope your husband comes around...to bad you have to deal with that as well.
God Bless -
Leanne, my thoughts are with you as always. Leanne, read, re-read and re-read Susans post this is just fantastic please give your sister a big hug from me Susan. How are you getting on with your Mary Poppins lady Leanne?
Barb, know what you mean about the sleeping pills I leave them off and I dont sleep but I dont want to keep taking them!
Well what a day yesterday - we spent 8½ hours at the hospital. Saw Oncologist at 10.30 and then had to wait 4 hours for Herceptin prescription to come from pharmacy - long wait cos of first time etc etc etc. Then I found out it is 2 hours to administer not 45 mins as I had thought (don't know where I had this info from). So they set me up and then after about half an hour or so I had a reaction - started shaking all over, went very cold and felt sick. They had to stop and give me some piriton and steroids and then wait until I had stopped shaking, then they started Herceptin again but had to slow it right down. They said next time should be better and they will need to give me piriton and steroids (dam things) before they give it to me next time - apparently this does happen sometimes?? - typical of me. I also had to have a blood test to see if I am pre-menopausal or post-menopausal as apparently I have to take Tamoxifen or arimadex (depending on blood results) as well as Herceptin, so I have to go again next Tuesday for blinking results of blood and to start pills think this was a bit of a slip up on the part of the Oncologist?? grhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh
Sandra from the UK -
Sandra,
sorry to read that you have such a hard time with Herceptin.
Could it be that you might not need steroids and get used to it? (they told me that could be the case with Taxol)..
Nothing is ever easy, just when you think live lights up, something is brewing...
I will keep you in my prayers!
God Bless -
Hi everyone. Well I had my oophorectomy on 5/9/06 and I am doing okay. Probably doing more than I should. I am out of work for 3 weeks and my time is flying. I don't want to work anymore. I just want to slob around and take care of the kids-- 0h yeah and watch Oprah. Too bad credit card debt will get my butt back to work soon enough. My photography business is doing okay and that is so much more fun than nursing. My hair is back. I have a nice furry top now and I have had to Nair my mustache and side burns twice already. If I did'nt I would have Elvis sideburns by now. I start Arimidex in 2 weeks. My MUGA scan was 55%, the cut off point is 50% so I am going to continue on herceptin for 3 more months. I also had a bone denisty test which revealed that I am "Osteopenic" the beginning of osteroporsis. They put me on Fosamax weekly, Calcuim supplements and as soon as I am cleared by my GYN I need to start weight bearing exercices. I am imaging a nice firm fanny someday!!!!!
My weight watchers is okay, I have lost 10 pounds, need 40 to go!!!
Leanne -- So sorry that your having a hard time with the lastest chemo. Stay strong, eat well and get plenty of rest. Sorry to hear that Scott are having problems again. I hope that works out for you too. Glad to hear the boys are still enjoying the pup.
Sandra, How scary was that!!!! I remember getting benadryl with my first dose of herceptin and it was given over an hour or more and they took my blood pressure every 15 mins. Glad you made it out okay. Hope that your reaction was a one time thing.
Susan -- loved the story. I have a friend down here that was dx with stage 4 -- mets to the liver. I will share this story with her.
Hopeful, I am praying for you!!!
Fight fear with prayers ---- Marg -
Hello my lovely friends
Well the results of my latest results are in and it would appear that the liver tumours are SHRINKING!!!! I am so happy I practically danced up to chemo and even 10hours in the chair couldn't dampen my spirits! I chatted my head off to the nurses and probably drove them nuts! :-D
The only thing is is I wasn't give exact numbers to compare with the old CT so we aren't sure how much it has really shrunk. The problem was the radiographer only had my MRI to compare to the recent CT which really is like comparing apples to oranges. Both fruit but that is about it! So my onc tracked down my original CT and had a look at them both side by side and there was some definate shrinkage. YAY!! I guess at the end of the day that is the main thing and I shouldn't be so obsessed with the numbers game. Would be nice to know though....
Anyway, the plan now is is I am half way though treatment- what I have already done I need to do again, get rescanned again and then hopefully I get a break. The idea is to then stablise the tumours at the size they will be at then and hope herceptin is successful in doing this.
When I asked my onc if it is possible the tumours will be gone completely (NED) at the end of the next round he pretty much said no- that there is about a 1-2% chance. Well my reaction was "I had 1% chance of a fibroidenoma changing to cancer which did, I had a 1% chance of developing mets and did so I will TAKE the 1% thanks!!!" I think he was pretty shocked at that!! :-D :-D After all, SOMEBODY has to be the 1% right otherwise it would be an impossiblity!! Fingers crossed ladies!
So obviously I am very pleased at this all and am just so hopeful it continues. I can really tolerate these bouts of sickness now I know it is worth it!
On top of it all I am now starting Zoladex to switch off these pesky ovaries that are continuing to function with a view to an ooph in the next few months. Apparently it is rather well tolerated but since they said that about the gemzar we will see.
Susan- thank you so very very much for sharing the story with me (us). It really does help to hear that and I am so glad she is doing well.
Marg- glad you have recovered well from the ooph and the weight watches is going well. Good on you for getting back into it all!
Sandra- how scary! I am glad you are okay. Over here they give all the premeds (steroids, etc) for the first herceptin as routine (I think) but I am glad they are going to give all this to you next time. Also, obs are taken every 5 mins initially and infused over AGES to prevent reactions so I was rather suprised they didn't do this for you. Main thing you are okay and it is all systems go!
Barb- I got rather freaked out about the ativan as apparently, despite what we are told there is TONS of stuff about it being really really hard to give up. 1mg of ativan is equal to 10mg of valium so no wonder it works so well! I swapped to temaz for sleeping once i did a heap of research on ativan (I was having MAJOR issues trying to stop taking it at night) and now am able to sleep unaided most of the time. Actually I have just reread this and I hope I haven't freaked you out? I can relate to it and in my chemo fog probably sound like a know it all...sorry..
Hopeful- good luck with getting the lump removed I am thinking of you and please keep us posted.
I know I have missed some of you but I am sleeeeeepy now (yet strangely jittery damn steroids) so am off to pop my buddy temaze and off to bed!
love
leanne
xoxo -
Well this is just great news. Quality Life Issues? That is when you are told the chemo is working and the tumors are shrinking. I am just so happy for you.
Ativan and Xanax are both addicting. So when you are ready to go off it, you have to wean yourself. Im not ready to give up my xanax just yet.
Nickii -
Leanne, I'm very glad for you that chemo is working - I agree with you that statistics do not mean very much, each of us is an individual, with different bodies and different results - I pray for you and believe it will work.
Susan, sorry to hear about your herceptin experience, it does sound like the onco. messed up. I'm sure it will go better next time.
I stopped taking ativan post treatment, and was given Starnoc to try, supposedly less addictive. However, it is short acting, so that you only sleep for about 5 hours after you take it, and that's it. I did not find it helpful, so I have stopped that as well. I am managing without it.
Our beautiful spring in Toronto has turned pretty cloudy and rainy the last couple of weeks, but the flowers are lovely.
Linda -
Leanne,
doing the dance for you too!!!! Those are awesome news!!!!!
God Bless -
Leanne - just popped in to see if you had posted (4 am in the UK) before I go away for 4 days. Brilliant news - I will go back to bed now but I am so excited for you doubt I will get back to sleep.
Speak to you all on my return - Sandra from the UK -
Leanne,
I am so glad you got some good news. You are in my thoughts and I pray for you everyday. We are all here for you so vent away.
Take care of yourself.
Jackie -
HOORAY LEANNE!
Quote:
So my onc tracked down my original CT and had a look at them both side by side and there was some definate shrinkage.
If the shrinkage is visible to the naked eye - without the formal numbers game - that is FANtastic! My prayers continue. And yes, that 1% comes from somewhere, so it may as well be you!
Sandra and Leanne: re herceptin. Sorry to hear of your reaction, Sandra. Sounds just dreadful.
I was given no premeds, and they only took my vitals before beginning, then asked how things were going every now and then. I get constriction of the chest/slight difficulty breathing, which then lasts a day or so. Also, feel just a little off colour/got the flu for 2-3 days after - but it is beautiful compared to FEC.
My only concern is heart function. Down to 52% from the FEC, so didn't start very well. Next herceptin tuesday, followed by heart function test on Friday (1 week from today). I'll see how it goes.
I haven't petitioned parliament, written to politicians, spoken to the health minister, talked at public forums etc to be now told I can't have it!!
Susan THANK YOU for sharing your sister's story. What a lot your family has been through and had to deal with. How inspirational you both are to others. -
Leanne, what wonderfull news!! I agree with you - make that 1% work for you!!!!
Sandra, sorry to hear about your reaction to Herceptin. I had a similar reaction hours after my first tx, but none since. Having 3rd tx today. Love your new pic!!!!
Only 3 more rads to go!! Diet also going well. Lost about 5kg in the last 3 weeks. Saw my GP yesterday after suffering from upset tummy (really badly) for 4 days. She says my immune system is extremely low, and the natural flora of my body depleted, so I am doing huge doses to build it up again.
Have a nice weekend everybody. Thinking of all of you!!!
Liezel -
Great news, Leanne!
Spin that globe and feel the good wishes from around the world helping you get throught he rest of those treatments. Of course you can be in that 1%! You deserve nothing less.
Thanks, Susan, for that inspiring story about your sister. You've mentioned her before but I appreciate hearing about the details. May she continue to have a long and happy life.
Congratulations, Marg, on your successful surgery. Take care of yourself and continue to pursue your photography because that's what makes you happy. Enjoy those kids!
Hang in there, Sandra! Hopefully they'll be better prepared the next time. Enjoy your trip! Hope you have a great time!
Liezel, 3, 2, 1 Yippee! Take care of that tummy!
I'm feeling great. I'm looking forward to a busy weekend trying to fit my daughter and all her stuff from college back into our house since her room and many closets are still affected by our renovation. (I'm definitely doing better than my house)
Take care, everybody!
Love,
Peggy -
Hi everyone
im sorry i dont post very often...nothing new for me...im back to work and enjoying it.
Leanne...terrific news..im so pleased for you.
Take care everyone
Maxine -
Maxine,
Isn't now news good news? Glad you have found your new normal!
*susan* -
I have been so busy (I have decided I can feel like crap at home...or get off my butt and feel like crap and do something...LOL)
The Neurotin is helping and I have 3 more doses of weekly taxol left. I am marking off the days. I am going to see if I can get myoncologist to do a routine scan just to make sure everything is ok.....
I came in to see how everyone was doing and Leanne....your news is WONDERFUL! They told me I had a 4 in 10 chance of being alive after 5 years....most with mine are not disease free....the oncologist feels I am on the home streatch to being NED! YOU CAN BEAT the odds...they are just a numbers game and they don't depict fact! -
Well I have felt really boosted reading the good things in the posts. Leanne WHHHHHHHHOOOOOPPPPPPPPEEEEEEEEEE.
4 days in North Yorkshire (Nr Scarborough Peg) great to have a change of scenery but the weather has been atrocious. The highlight of the holiday for my hubby was that I fell over TWICE (not very elegantly) luckily no damage just humiliation.
Peg, dont know about feel great you look great in the daffodil photo.
Herceptin I did have my blood pressure taken at regular intervals hopefully next time will be better but it has made me somewhat apprehensive. Saw Oncologist today for blood test results on whether I am pre or post menopausal post (this has to be good) so she has started me on Arimidex.
Going into work on Friday for a team meeting and to get my desk into some sort of order think it has been used as a dumping ground in my absence veeery nervous about going in and I so wish my hair was just that little bit longer oh well they will natter (talk) about me for a day and then move onto something more interesting hopefully.
My son is home from Royal Marines 10 days has more holiday than me?! More washing, less food in the cupboard, pinching my computer, noisier but great to have him home.
Speak soon and hugs to you all.
Sandra from the UK -
Leanne, congrats on the results! you go girl Kick A$$
Praying for 1%
To all those on the weight war well done, I will be joining the ranks soon.
I have been doing well, the burns from the rads are all healed. Went to see about Ooph last week need to go on the waiting list now. Have Ocn Dr appt on Tuesday for final wrap up?
hopefully all will go well, report in soon
Nicole -
I wasn't going to mention this but I just need to vent.
The biggest side effect I have at the moment is a financial one. Those six weeks in Sydney really put a strain on the budget. We always have a pretty tight budget anyway but trying to run two house holds off one budget while I was away has just financialy crippled us.
We have been recieving charity assistance with our bills and food vouchers since my return. Do you know that all most all the money that gets raised for cancer goes to Reasearch? I know that's great and we wouldn't have things like Herceptin with out it, but what about those of us who are right in the middle of the battle. Any money set asside goes to support services (education,leaflets etc) but no financial aid.
I may not have cancer any more but I will have it's side effects (debt) for at least 5-6 months. It's hard to move on and try to return to a "normal" life again when everything we do is still effected by this.
On a brighter note I have applied for a customer service position with a Govt department, it's only part time but will almost double our current income. So fingers crossed.
Thanks for letting me rant
Nicole -
Leanne, you go girl! I also read your optimistic report over in Recurrance! Having hope makes so much of a difference, and knowing that the tumors are shrinking is enough. So good.
Nicole, oh the financial reprucussions have been huge. As a self employed person, I always keep 'a rainy day' fund equal to about 6 months. Well this has been going on for far longer, and that money is gone. We don't qualify for any help, so we are doing a HUGE juggle. 5-6 months will be over sooner than you think. Sending good thoughts so you get this job!
Peg, our daughter's stuff is still in the guest room. It just doesn't seem to move up those stairs. I love having her home. We are having a good time together; none of those awful scenes I was prepared for.
Liezel, your rads must be done by now. Congrats on reaching the finish line!
Hard week here... I will write more about this later. Right now I am on deadline and need to do the final touches on this project.
Best to you all,
*susan* -
Hello all you lovely ladies.
Just popping in to say Hi, and to wish you all a happy Friday!
Sorry to hear of the difficulties, Nicole. My local hospital volunteer unit helped me out so that I could get a prosthesis. It wasn't much, but it was appreciated. Perhaps you could try your local for some assistance?
All the best for your job application!
Sandra - glad there were no injuries in the falls. A bit of a worry though - not from too much 'celebrating'?
Hope the 'Team meeting goes well. Don't be nervous - you'll do just fine! Look how strong you are!
Peggy - glad to hear you are doing well. On with the renovation!
Liezel - glad the rads are over. Hope not too much discomfort. Love the new picture!
Susan - so glad your daughter's visit is smooth. These times are so precious. I often WANT them to go so well, I get stressed out and spoil them!
Sorry to hear you've had a hard week - work? home? health? Thinking of you.
Leanne - how goes it? Hope this week's treatment was more manageable.
Michelle -
Hi ladies
I have been for my three month check-up and requested a routine liver ultrasound,as my one year anniversay is almost here (10th June), and my mother had liver mets...so i want the peace of mind...the doc has also thrown in a chest x-ray as well..
The appointments aren't for a couple of weeks, I will let you know how i get on...
Have you ladies seen the thread called "put a face to the name"..under the "moving beyond cancer" section. It is terrific, loads of pics of all the lovely ladies that post on this site..take a look!
Michelle...I loved all your pics there!
Leanne, Terrific news about your scans...isn't "shrinking" a lovely word!
Take care all
Maxine -
Hello all,
Leanne I am so happy for your news! Dropped in to catch up and send my thoughts to you for rest and strength.
Susan thanks for sharing your sister's story. Hope all is well.
Peg love the daffodil picture!
Nicole, keeping my fingers crossed for you too and that your trouble ease sooner than 5 or 6 months.
Marg, you are inspiring me to get off my butt and get back exercising more, I gained 10 lbs during chemo and the joint aches are just starting to lighten up. My doctor sent me to a physical therapist and has it been an eye opener to see how weak I've gotten.
Am doing great otherwise, can't wait for school to get out in two weeks and play, seems like a very long time since I had time off that wasn't related to being sick! Am going to Italy in July with my boyfriend and I have never been to Europe before so am very very excited. Will be in Venice on my birthday toasting one year of survivorship as well!
Wishing you all a great weekend!
Lisa -
Lisa,
I have joined a gym for the first time, mainly to use the pool. I do a couple of aqua fitness classes and some lengths in the pool (I am not a very good swimmer, but they have these small flotation belts) - the point I am making is that it has helped me with the joint paint and the arm pain, post radiation. The scar under my arm (node dissection) is still tight, almost a year post surgery, but the pool is definitely helping me.
I have my first post BC mammogram in a couple of weeks, and am getting more and more nervous.
Tamoxifen hot flashes have lessened somewhat, to several times a day, from once an hour.
Linda
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