Anyone starting chemotherapy in July?

xxyzed

Off for my 2nd dose dense Taxol/Herceptin infusion shortly assuming my bloods are still playing good. Every time I ask about them they say they are very good. I'm wondering if that's very good for a normal person or very good for someone who's had lots of chemo. It's school holidays here so I need to drop the boys at a new day camp before I head in so will be a bit pressed for time. Fingers crossed for no infusion reactions while there today. I'll have to see what the oncologist says about the face rash I had the next day last time and my proposed painkiller regime for the severe bone and muscle pain I had days 3 to 6. I'm back to 100% now except the mild neuropathy on the top of my fingertips so at least I know it should just be temporary. Wish me luck

stephincanada

Good luck, xxyzed! Have you tried icing your fingers and toes? I put my fingers in the ice like a bear claw (tops of my hands facing ceiling, finger tips down in the ice). The cold didn't bother me as much this way, and I was able to keep my fingers immersed in the ice for much longer than I would have had more of my hand been in the ice (hope that makes sense). I took an old pair of socks, cut the toes off and wore them on my feet while icing my toes.

I had my docetaxel/Herceptin yesterday and my face is beet red today. It happened last time but when away after a day or two.

I received a print out of all my blood work starting on the date prior to my first chemo. The numbers had been drifting town, but then plummeted when I started bleeding. My doc said it is normal for blood levels to sink because the chemo prevents the bone marrow from making new blood cells (or he said something like that--I am definitely cognitively impaired these days...)

Hope all goes well for you today.

stephanie

VLH

StephinCanada, I'd missed the note about your hospitalization. NO FUN AT ALL! I'm glad that you got the Perjeta approved. You've got a great arsenal of drugs aimed squarely at your cancer.

Lyn

xxyzed

So I've been told to take extra phenergen tonight and for the next few days to hopefully stop the rash coming tomorrow. I've also been prescribed longer acting ibuprofen and panadeine forte for the bone and muscle pain. Hopefully these do the trick and the rest of my chemo while drugged up can be problem free.

I haven't tried the icing on my hands or feet. I don't really fancy doing it for the 3 hrs the taxol is running. I suspect if the neuropathy starts annoying me too much I'll request it from then on.

I also asked about my blood work. Apparently it's super good for a healthy person not a lots of chemo person so that's good news that the neulasta shots are doing their job

HelenWNZ

Hi everyone - it's been a while for me posting. I have been reading anything that has been said and I think your all like me getting on with the job best we can.

I finished my 3 rounds of docetaxol and herceptin and man that was hard work. First round 5 day hospitalisation, second and third rounds were each reduced due to diarrhoea and severe bone pain. Paracetamol and ibrufen combined for that. It was tough work on my mouth, finger tips are numb. I got a mild rash on my chest, taste buds were very off. But hey I survived. Injections brought up my blood work and I've always been told I'm good to go but not the actual levels so I must ask.

Today I have my second fec round - herceptin stopped while doing this for heart reasons. This is a totally different cocktail. No bone pain. The nausea was well controlled with meds. The tiredness was extreme even on steroids. What got me is the chemo brain made me wobbly on my feet and I made the mistake of going for a walk and felt like a drunk person stumbling all over the place.

But having said that I was ok to go to work after a week.

Other little things I've noticed - my skin is so soft. I always had dry skin but smoother than a baby now. My fingernails are damaged with red streakes underneath. A couple have gone yellow and others have cracked. Nasal hairs gone so have a wee sniffle a lot of the time. My other half says I am sleeping really heavily and snoring the roof off - whoops. It appears I am unlucky to have developed lymphedema so are asking for referral for that.

I have a worrisome pain in my back so have a referral for a bone scan in to. Given my heavy lode involvement I have to check it out.

It's kind of a busy life around appointments and its school holidays here to so a big juggle to keep my boys entertained. It's warming up here too so a few outdoor things planned, once I'm up and about

I hope I haven't bored you all with my ramblings. I hope you are all well and happy.

Take care

Helen

stephincanada

Good morning everyone:

I thought I would skate through docetaxel because I am at 75% of the dose, but no such luck. The effects must be cumulative because I am feeling them this time (after second treatment). Bone pain and exhaustion.

Helen, good luck with your kids being on break. I felt terribly this weekend because my kids watched tv the entire time. I didn't have the strength to prod them to do their homework or go outside to get some exercise. My taste buds are also off on docetaxel, but sadly my appetite remains the same. So I am eating lots, but it all tastes awful. Sounds like you are finding FEC easier than D. That is good news.

Xxyzed: I forgot that one of the chemo nurses said that icing is for docetaxel not taxol, so please disregard my suggestion to you. Are you feeling ok these days? Has the additional pain medication been helpful?

Boriuca63: are you still managing to work? When I feel unwell, I think of you and marvel at your strength.

Cwhitney: I am staring to grow a bit of baby fuzz on my head. To me, this signals regeneration and regrowth--of hair, yes, but also of the strength and vitality I once had. We will be back to our normal selves soon!

I am still bleeding and the doctor has prescribed progesterone. I am terrified about taking a hormone, but won't be able to continue chemo if it does not stop. Such a predicament.

Hope everyone is doing okay...

boricua_63

stephincanada, I am not working anymore. I developed two blood clots in my heart and one on my lung and one on my medi port, and the onco took me out of work for the rest of my treatments. Now I'm on blood thinners. And have to see a cardiologist. Go me!!

I did finally started my taxol weekly treatments and so far so good, of course I've only have one so far.

Hope everyone is doing good.

xxyzed

Well I've survived another round of chemo. I am definitely finding the taxol worse than the AC. Minimal face rash and no pain this time but majorly out of it with all the painkillers I was taking. At least only two more of the horrible ones to go and in a months time I'll be stressing about upcoming radiation instead. The neuropathy in my fingertips doesn't seem any worse than the first round. It's still there but not bothersome.

I've been dragging myself out when I should have stayed in bed for the kids during their school holidays. Everything we've done has been boring! I think it's just their age but I really wonder why I bother sometimes. They would be much happier spending 100% of their time in front of screens

HelenWNZ - fingers crossed for your bone scan. Hopefully your back pain is old age and completely not cancer related. How many of the FEC are you doing?

Stephincanada - I keep looking for hair regrowth but can't find any. I'm also still waiting to lose the hair I've still got. My eyebrows are definitely looking sparser with taxol. I think it's going to be a long regrowth period. You would think with hormone negative cancer you would be safe from the hormone treatment. It's a shame you're menstrual cycle didn't get the memo. I hope you're heavy bleeding gets under control soon.

Boricua_63 - I think you win the prize for crappy side effects this week. Blood clots are scary business. I hope your medical team is on top of it.

Hang in there July buddies. I'm just really hoping I can see out the rest of the chemo without anything too unmanageable cropping up. Maybe there is an end in sight after all.

HelenWNZ

Hi everyone good to hear from you.

Boricua 63 sorry to yourve had to put up with "extra" side effects. The expected ones are bad enough. Hopefully you get it sorted and there is no lasting damage. You were amazing managing to carrying on working as long as your were.

Xxyzed - school holidays are hard work. My boys unfortunately got me in my bad week so I dictated from the couch. FEC is pretty crappy and plays with my head but no bone pain. Me thinks swings and roundabouts with no winners either way. I had my bone scan and 3 monthly heart scan so now wait for results. I am so afraid that things have spread.

Stephincanada thanks for the good wishes.

I have a head of bristles all my coloured hair fell out leaving white stubble. I so far haven't got the shiney bald head I expected. I'm kind of not phased about the hair just try not to shock others is my aim.

For me one more FEC on the 21st, and will wait for the radiotherapy call up after that.

Take care.

Helen

xxyzed

It looks like we're on similar timeframes HelenWNZ but I've got two treatments to fit in as well as the weekly Herceptin. I agree with the no winners when it comes to chemo. Just got to get through it. I've even stopped caring about offending others with my balding head. It doesnt bother me or my boys and with the weather warming up I've started braving the world head cover free. It's really not a good look but I figure my comfort comes first. I definitely breathed a sigh of relief when I passed by heart test. One less thing to worry about for a while. I really hope your scans come out clean. I think the fear of spread will stay with us for many years to come and I think it's a fear anyone who hasn't been through this just can't understand

stephincanada

xxyzed: I am with you on wanting to go "bareheaded". I don't cover up for my D.H., mother, sisters, etc., but my teenage daughter has said she'd prefer that I continue to cover up. I am actually getting used to the bald look. It feels very "GI Jane", or reminiscent of Sinead O'Connor. Losing my hair has made me realize how narrow society's range is for female beauty.

As for taking hormones, my M.O. said that my cancer is "blind" to progesterone, so it is OK to take it. However, I met a gynecologist who told me that women who have hormone receptor negative breast cancer survive longer once they have had their ovaries removed. She said that there is clearly a relationship between hormones and ER/PR negative cancer, but they don't know what it is. Another doctor I saw said that it is believed that all breast cancer, even HR negative, has its origins in hormones. So, I am trying desperately to avoid taking the progesterone.

I will have my ovaries out at some point in my early 50's, I think.

Natalie68

hi all, I had my first round of paklitaxol and all went well. I had a little pain but nothing too bad. The night before round two Of taxol I had a pretty substantial allergic reaction to goodness only knows. I came out in a severe rash as well as my hands, feet and face swelling. I took an antihistamine and headed off to ed. it didn't result in a full anaphylaxis but was pretty scary and they have called it anaphylactic As it was six days after the infusion they don't think it was the chemo. My naturopath thinks it may just be my digestive system not coping.

I was due chemo the next day. It they didn't do it as I was still swelling up! The next day I again ended up back in ed with a temperature which ended up resolving itself whilst I was there! Again no idea why! It had been a miserable day and I was lucky I didn't have any work that day.

Very odd and a little scary as I have pretty much soldered on with everything - kids, work, life.

I have finally sold my camper trailer so I'm hoping that will take a bit of financial pressure off me for a while and I won't feel like I need to be working as hard. It's fairly exhausting.

Anyway great to keep reading about how everyone else is.going. Keep up the fight girls xx

Natalie

stephincanada

Hi Natalie,

So sorry to hear about your scare. Did they give you an epipen (epinephrine) in case the allergic reaction happens again? Did you take a steroid with your first dose of taxol? If so, I wonder if the steroid masked the allergic reaction, and the allergic reaction "broke through" once the steroid wore off (just a very non-medical guess). Chemo does crazy things to our bodies. Has your next taxol treatment been scheduled or is it on hold?

Glad that you found a way to ease some of the financial pressure--you certainly have enough on your plate right now. Sending you lots of strength...

Stephanie

Natalie68

hi Stephanie, no epipen but I tell you I'm not going anywhere without the tablets! I have my next infusion on Wednesday, day after tomorrow. Yes I had steroids as well as an antihistamine when I had the infusion but as the reaction was six days after they felt it wasn't an allergic reaction to the chemo! Here's hoping.

I was just re reading thoughts on going bareheaded and I looked at my head that although I've lost all my normal hair I seem to have grown this course grey/blonde/white fluff and I'm seriously considering getting it dyed a bright pink 😆 I don't know if the dye will take or not! With summer coming it's going to get harder and harder to keep my head covered particularly with the damn hot flushes that come in so rapidly!

With regard to the ovaries I'm keen to have the entire lot taken out asap. I'm 47, I have my family and no need for ovaries or uterus seeing as the hormone blockers can cause uterine cancer they can keep that with my boobs!

Natalie

xxyzed

I was hoping to make it through chemo without any hospital admissions and unfortunately haven't made it. So far I have had 4 dose dense AC treatments, 2 dose dense Paclitaxol and Herceptin treatments and inbetween weekly Herceptin. Despite having no previous reactions at time of infusion at yesterday's paclitaxol infusion I kept getting rapid onset flushing from my chest up my face. Each time the infusion was stopped, i was given more phenergan and steroids and restarted at reduced speed 30 min later. This went on multiple times and each time I had the same reaction. Eventually I was admitted to the ward and received the 3 hour infusion over 10 hours with no further incidence. A very long day and night (a full 24 hours in fact from arrival to departure) and needless to say i'm tired now. Fortunately my mum who took me to treatment was able to stay over at my house with my boys, my reactions were mild and I was able to get the full dose even if it was long. The good news is only one more paclitaxol to go assuming the oncologist is happy to continue.

Cwhitney

xxyzd, I am sorry you ended up in the hospital. Prayers for you with your next infusion. I totally agree about the hysterectomy. I have a full hysterectomy scheduled in December since I am brca2. I was going to have the ovaries out anyway whether I tested positive or not since I am triple positive. So, menopause at 42. I have to admit, it has been nice not having my period and worrying about the female cancers will put my mind at ease. At least with this one, I have control to be preventative. The gyn was going to just take my ovaries and fallopian tubes out but I pushed for everything and she agreed. The only problem is it's a two month recovery. It can't be as bad as my mastectomy which was a nightmare. Natalie68, I have the same kind of weird hair right now except it isn't growing up front so I have a receding hairline. It does give me hope though that the Taxotere didn't destroy it though since it is growing. I have one more chemo left and can't wait to finally see hair come back. I am thinking of you all and wish you all better days!

Natalie68

After my minor allergic reaction the day before I was due my weekly paklitaxol infusion they felt I shouldn't have the infusion and I didn't get it. I went along the next week (last Wednesday) a quite huge reaction -it was fine when it was very slow but the second they turned it up a bit i was in all sorts of trouble! They medicated the heck out of me and tried to put it on slowly and I immediately came out in hives.

So it was one heck of a scary failure. (Thanks roofcat for your pm'ed info - it seemed the Abraxane or other paklitaxol is only available in the Australian PBS for stage iv which makes no sense to me). Sounds like xyzed and I both have the allergy to it. I'm glad you are through your infusions xxyzed. I've only managed one of the 12 weekly ones😔 They are planning on filling me with steroids and antihistamines this week and having a very slow infusion. This is going to be a difficult few months - not sure weekly steroids is such a great idea 😳

I have to admit my mood and outlook has have taken quite a dive given the anaphylaxis and fear for both getting the chemo and the alternative of not getting the chemo both have me fearing the worst.

I'm struggling with this whole thing quite badly! Xxyzed I'm pleased you managed to get through the infusion, albeit slowly! Gives me hope!

I'll take all crossing Of fingers, hopes n prayers of getting through Wednesday.

Best wishes to everyone.

Natalie.

Shellywin16

Hello everyone I have been lurking on this post for a while and I have read everything that you all have post so far. I was diagnosed in June with stage 3C breast cancer at the age of 33, I have done 4 treatments of AC so far and 2 Taxol. I have 2 more taxol treatment to go which I am not looking forward to, I have had the worst bone and muscle pain from the last 2 rounds of treatment. Its kind of weird because as alot of you have mention that your oncologist stated that the taxol treatment are the less problematic ones but it seems we are all feeling the opposite of what we are being told. I am praying for all of us who are hanging tough despite some set backs, reading some of your post about how tough its been makes me grateful and feel bad when I complain about having the muscle ache and pain. I am praying that we all get through this part of our treatment and move on to whatever else is the next stage of treatment, for me it will be surgery and radiation. Hugs and will wishes to all of you!

Shelly

nye1980

I just had the fifth of my six infusions yesterday and just as I started to feel some sense of relief to almost be done with chemo, I get a shot of Zoladex and the promise of AIs after my last chemo. Boo. And, of course, radiation to come. My MO wants to do a CT of my chest and abdomen before the last chemo and that's giving me scanxiety even though my last scan while admitted for my mastectomy was clear. Can things change so quickly, even while on chemo? So afraid this isn't the end I thought it would be.

DancingElizabeth

Hi All...

Welcome Shelly...Taxol has caused me a lot of muscle pain and in addition to that - MORE Tender scalp and hair loss, eyebrow loss and eyelash loss!!!! It has not been fun...

Nye1980 - I had to have a repeat CT to look at a lung nodule. Even though they considered my first CT as clear and no evidence of mets. They were NOT concerned about it but it gave me a GREAT deal of anxiety. It was stable but they STILL want me to do yet another one in 3-5 months - to check again. They even say it is a good CT but still want a follow-up. Good Luck hon...I would definitely ask them why. It helped for me to know the reason but still gave me crazy anxiety.

I will post more later. I have to get up and get my DD ready for school...

Am done with AC and Taxol! But, so bald right now my head feels COLDwithout a wig or cap....

HelenWNZ

Hi everyone

Had to have a wee chuckle scared67 we here are heading into summer and my head feels so hot with any headwear on. I'm ripping it off as soon as I get indoors. Was halfway to supermarket the other day and realised I had forgotten it. Yes I did go back and get a cap don't think the public and me are ready for baldy yet.

I had a ct scan before surgery which showed all clear. But it was 8 weeks before I started chemo so with an agressive cancer it's always been a worry to me could things have spread in that time so when I mentioned a niggle pain in my spine to my oncologist last round I was hurriedly given a bone scan and another ct scan to check things out. I get the results tomorrow.

Here tests with symptoms is the normal.

Having said that with my radiotherapy consult on the 1st another scan is part of that.

One more chemo to go this Friday - yay.

Take care

Helen

nye1980

Scared67, I did have a lung nodule as well that was considered too small to be biopsied and so unlikely to be mets. I imagine they'll look at that as well. So scared, though. I just desperately want to be done with chemo and take a breath. It feels like I haven't taken a proper breath since all of this started.

DancingElizabeth

nye1980 - I know what you about wanting to be able to take a breathe and not feel scared and on guard. To me it almost feels like I am being hunted by a wild animal and am doing everything to prevent it from finding and killing me. I never feel safe anymore - not even when I am doing something fun. I know there are success stories out there...one of my big sister's friends was dx with Stage 3 C - almost 9 years ago and is doing very well today. But, I still feeling like I would be lucky if I got 5 years....

DancingElizabeth

LOL Helen, on your almost forgetting your cap! I was about to leave the house, said bye to DH, gathered my things together (including my coffee), locked the front door and while walking to the car - realized my bald head was exposed!!! Ran back into the house and grabbed my wig. Though I'd rather wear a cap because I'm tired of wearing my scratchy wig - still not brave enough.

Cwhitney

scared67, I have 2 survivor friends that were stage 3c and her2 and they are three years out and doing fine. I know it's hard since we are all in the fight but there is alot of hope. When I have bad, hopeless days and I feel desperate, I pop an Ativan and it seems to calm my nerves.

stephincanada

Hi Scared67: My mom was 3C 9 years ago, she had about 9/21 nodes positive, ER/PR pos, grade 3, and she is totally fine now. She has been on an Aromatase Inhibitor since then. I agree with Cwhitney re: taking Ativan. It is a wonder drug and has gotten me through some really tough times (and I do take .5mg before bed every night--that is going to be a difficult habit to break).

Natalie: so sorry to hear about your allergic reaction. Fingers crossed that you M. O. allows you to proceed with the next Paclitaxol infusion. I agree it is crazy that you wouldn't be eligible for an alternative unless you are later stage. If you are refused the next treatment of paclitaxol because of the allergic reaction, you might want to try begging for the alternative drug (is it taxotere/docetaxel?). I did that to get an earlier surgery date--I was completely shameless, but it worked (I blush now just thinking about the scene I made). If that doesn't work, perhaps there is a right of appeal you can explore. But hopefully the next infusion will go smoothly, even if slowly. Fingers are crossed for you. Socialized medicine has its pros and cons, for sure.

xxyzed: sorry to hear about your traumatic event, too. I hope that your overnight stay wasn't too disruptive for your boys, and that you are faring well now.

I decided to ask my M.O. to ramp up my dose of docetaxel from 75% to 100%. I had that on Wednesday. My mother told me that it is going to be difficult for her to feel sorry for me because I am a glutton for punishment! : )

I went to see my breast surgeon to book a date for my mastectomy. To my surprise, she spent the appointment trying to talk me out of doing it (I had a lumpectomy when first diagnosed). She said that studies show a mastectomy won't improve overall survival. It would help prevent a "local/regional recurrence", but she said I would be monitored for that with an MRI/Mammogram once a year, each staggered six months apart. That seems risky to me, and it looks like almost everyone in our group has had a mastectomy. But my surgeon was very persuasive and I am now having second thoughts. I am so confused!

Cwhitney

Weill I had my last chemo yesterday and I got to ring that bell. I still have 9 more months of herceptin, a hysterectomy and two more reconstruction surgeries but I feel like I got over one mountain. I can't wait for the hair to start coming in. This wing is really getting old!

Stepincanada, I'm sorry your breast surgeon is confusing you. I read a lot of research between lumpectomy and mastectomy and I did find that women under 50 should highly consider mastectomy because there are more years of having a reoccerance. My bc suggested a lumpectomy for me because of the small size of my cancer but I wanted everything gone. I would take the pain all over again not to have to go through more scananxeity for my breasts.

Prayers for everyone else!!!

xxyzed

Great news CWhitney. I have my last treatment on Friday assuming it goes ahead. I don't think I'll be cheering until 2 weeks later when my side effects have passed. I've felt very ordinary during the taxol. I've been out of action a week each cycle and it then takes me the next week to get on top of the trashed house before I get to do it all again. At least that roller coaster will be in my past soon enough. I still have Herceptin and radiation to go. I'm not sure about reconstruction. I may just stay flat rather than have more surgeries any time soon.

HelenWNZ - are you done with chemo as well now. I hope your scan results were ok.

Natalie68 - did you get through your next infusion or too many reactions again.

It sure does seem like a long haul. So far everything has mostly come good between chemos and the side effects I've been left with feel like they will pass with time.I'm just hoping my luck holds out for one more.

HelenWNZ

Morning everyone.

I can also ring that bell chemo all done with! It was touch and go as I have a cold but my bloods came out ok. Now just got to recover - my bad week seems to have got worse each time with the crippling fatigue.

On 1st nov I have my intro to radiotherapy and hope to start that mid November, plus back to herceptin until July.

My scan they said was good although they want me to have another one in three months as there is a grey area on my right hip which they think is wear and tear.

My heart tests came back good too so really there's no stopping me - just got to get off the couch lol

Take care

Helen

nye1980

Just as I was recovering from my fifth chemo I ended up admitted for pneumonia and neutropenia. Bummer. But WBC is back to normal and just have to let antibiotics and my immune system sort stuff out. My MO has decided to delay CT scans for a few weeks after chemo since all the stuff going on in my chest would likely mess with the results. Last chemo on November 7 and finally this damn chapter of the Cancer Book can be done.