Forum Discussion
Next phase ... Chemo on Monday
Hi,
After the lumpectomy and sentinel node biopsy op, then next op of total axillary clearance of my right arm, I am now up to chemo. It starts on Monday. I am HER2 positive, grade 3, so will be having 17 injections into tummy over the course of treatment, taking full treatment time to 51 weeks ... ergh. Did you know that 3 injections cost around $6500.00 each? I pay nothing as a public patient but that is amazing ... thank goodness I am not in the USA with no health insurance! We are lucky!
The chemo oncologist yesterday said I was cancer free. The chemo, radiation and injections are done in a 'curative window' and for prevention of a recurrence. What did surprise me is she said that if I got a recurrence, it wasn't curable. It was treatable. I didn't like hearing that.
The first oncologist recommended a longer 6 month chemo treatment as less harsh. However, her superior decided on the 6 cycles three weeks apart, so 18 weeks. She said she thinks as I suffer depression and anxiety I might not last the distance or the chemo may upset my mood and make me a bit manic. She was pretty dismissive of side effects except hair loss! I was particularly worried about diarrhoea as have IBS and little warning. She said constipation was more of an issue.
I miss my breast nurse and surgeon ... the environment in the new building of the hospital is different and new, and I don't feel as 'safe'. I suppose I will get used to it as I will be there long enough. The junior oncologist was nice. I'm sure the senior is nice but not very warm and fuzzy.
I seem to be at appointments nearly all day in some cases and when I get home am awake till 1am ... I think it is adrenalin. On Monday I have to be ready for hospital transport at 8.30am, then have a radiation oncologist appointment at 10.30am, a breast physio appointment at 1.30pm and first chemo at 2.30pm. I can sit in the Solaris Centre after the radiation oncologist and have a treatment if I like. I will have to get an uber home as transport cut off is 3.30pm. Wondering if I should try rescheduling all appointments except the chemo or just get it over with? Tired just thinking about it! Plus an education session today - 2 hours in driving all up and 90mins there. Guess everyone is overwhelmed. Sore throat, rain and tiredness not helping.☹
After the lumpectomy and sentinel node biopsy op, then next op of total axillary clearance of my right arm, I am now up to chemo. It starts on Monday. I am HER2 positive, grade 3, so will be having 17 injections into tummy over the course of treatment, taking full treatment time to 51 weeks ... ergh. Did you know that 3 injections cost around $6500.00 each? I pay nothing as a public patient but that is amazing ... thank goodness I am not in the USA with no health insurance! We are lucky!
The chemo oncologist yesterday said I was cancer free. The chemo, radiation and injections are done in a 'curative window' and for prevention of a recurrence. What did surprise me is she said that if I got a recurrence, it wasn't curable. It was treatable. I didn't like hearing that.
The first oncologist recommended a longer 6 month chemo treatment as less harsh. However, her superior decided on the 6 cycles three weeks apart, so 18 weeks. She said she thinks as I suffer depression and anxiety I might not last the distance or the chemo may upset my mood and make me a bit manic. She was pretty dismissive of side effects except hair loss! I was particularly worried about diarrhoea as have IBS and little warning. She said constipation was more of an issue.
I miss my breast nurse and surgeon ... the environment in the new building of the hospital is different and new, and I don't feel as 'safe'. I suppose I will get used to it as I will be there long enough. The junior oncologist was nice. I'm sure the senior is nice but not very warm and fuzzy.
I seem to be at appointments nearly all day in some cases and when I get home am awake till 1am ... I think it is adrenalin. On Monday I have to be ready for hospital transport at 8.30am, then have a radiation oncologist appointment at 10.30am, a breast physio appointment at 1.30pm and first chemo at 2.30pm. I can sit in the Solaris Centre after the radiation oncologist and have a treatment if I like. I will have to get an uber home as transport cut off is 3.30pm. Wondering if I should try rescheduling all appointments except the chemo or just get it over with? Tired just thinking about it! Plus an education session today - 2 hours in driving all up and 90mins there. Guess everyone is overwhelmed. Sore throat, rain and tiredness not helping.☹
24 Replies
- @Unicornkisses thank you again, I have just added those items to my list! Realised I wrote I wonder how you would feel 'down the tract' instead of track ... got tracts on the brain! I couldn't even buy a comfy brand wireless bra in Target in black as they sold out! There has to be something out there ... you would think! Maybe trying enjoying the chase?
- @viking1 just a suggestion but as hard as it is keep drinking lots of water. I have found if I don't drink at least 3 litres a day toilet time is very hard, literally. I'm still on daily coloxyl and a product called agarol, a vanilla laxative drink from the chemist recommend by my oncologist. The agarol has made a huge difference to soften things up. Cheers, Jen.
- Hehehehe, @viking1 that is what this forum is for, talking about all the ugly bits we don't share with friends and family.
I too lived from one motion to the next, the private celebration in the bathroom when a motion passed reasonably normally was a highlight.
next to the toilet were - long sanitary/incontinence pads, unscented baby wipes (bulk) sorbolene cream ( apply when finished) pawpaw cream for fissures, extra toilet rolls. We went through a lot of toilet paper on chemo.
I did find it helped to get it going if I exercised a bit, and drank enough water, which I am really bad at.
Drinking milk also helped get things moving as I am lactose intolerant, also increased the gas though, which wasn't so nice to live with.
Yes, mastectomy is easier than chemo. It is done once and it is done. Pain is minimal, my arm works fine, the drain is a pest and hurts a bit now where it goes in, but I have no problem sleeping or anything.
I will have to buy all new bras and swimmers when I am healed enough, and that has started the anger side of my emotional issues again, because I resent the fact that the bra manufacturers have made such awful mastectomy bras. I don't do beige.
There are maybe 1 or 2 I like, but I can see it becoming a meltdown moment when I try to get something I think is pretty and sexy.
My lumpectomy I had with a reduction on both sides, so that was fairly major, but I was really excited to have size C breasts after living with DD/E and the issues they caused me, that I didn't chafe much at the recovery period.
I understand that radiation is easier than chemo, thank goodness.
But I can't complain, I am bouncing back from chemo really well, minimal side effects remaining, and those I can live with if they stay.
I am cheering with you every time you manage a motion, and breathing with you through the burn, try the creams, every time you go and after the shower. They help.
You'll see Paris!
Jennie - Hi ladies, thank you for the bonzer replies and info!
@Unicornkisses I have just added those juicing items to my shopping list ... been threatening to shop for two weeks now! To be crude, Jennie, these last few days I have been living from one bowel motion to the next! Having been doing the metamucil, 2, 3x daily and added the 2 coloxyl - testing to see if I can tolerate them 3x a day without getting the screaming ()-#@!!! The chemist said avoid sennocort sp? which I had used as it just encourages the colon to contract and can hurt. It also requires more to get the same induced contraction. She said the coloxyl is a stool softener so should hurt less. My butt is so sore, no bleeding but each trip to the loo makes the eyes water. Am sure there are razor blades down there! You are a trooper Jennie ... writing only 6 days after mastectomy! I hope you mend well and am wondering if down the tract you would say the surgery is easier on the body than the chemo, rad and other? Having the mastectomy will require more healing time and soreness I imagine, and then there are other body issues to work out. I don't know as it is complex compared with lumpectomy. Just personally I wish I could have had my lumpectomy and axillary clearance and that was it! Guess it's still on the table...just don't want my tombstone to read "She died because of a sore butt. Now she will never see Paris!" - Please avoid turmeric on chemo as it can stop it doing what it needs to do. There is a website that talks about this.
Many of us have anxiety /depression prior diagnosis. Most likely your symptoms are directky related to the dexamethasone rather than just your pre-existing condition. Unfortunately when you have a history of anxiety and/ or panic disorder it feels the same. So yes...work with your health professionals and I'm sure they will find a suitable balance.
I have included a link about interactions with treatment. All suppliments should be discussed with your oncologist. Kath x
https://www.mskcc.org/cancer-care/integrative-medicine/herbs/turmeric - @viking1 just caught up on your post! So glad you've managed to navigate around things. There are so many things and so incredibly complex that it's a wonder more than anything it affects are mentally and emotionally I found to the point of madness! I found the comment odd that you are 'cured' now but a recurrence is only treatable??? Can't make sense of that. So my initial diagnosis in 2011 I was cured then and my recurrence in 2015 was treatable. Huh LOL! Nah I was Cancer free too in 2015 after lumpectomy...my treatment after that was preventative, so 2yrs free :) chemo, Aromasin and even a mastectomy/diep flap recon...all for prevention. Keep going, you absolutely will get to the end and you wont believe how, but I promise you will!!! day at a time x Melinda
- @viking1, I am 6 days post mastectomy, and feeling good.
Todays path results were all good, clear margins and 20 negative lymph nodes.
The FEC and Docetaxol chemo regime I had was the same as you are scheduled for.
It can be heavy going the first two weeks but the third week I had my taste buds back, the mouth felt more normal, the nausea was okay, the energy levels were better and although my legs were leaden all the way through, week three was so much better because I felt human.
I had a little neuropathy in the middle fingers of both hands with Docetaxol, and that is still a minor issue, I expect it may get slowly better. The tongue neuropathy cleared by about day 14, and has gone.
Legs aren't back to the preChemo strength, but we are getting there.
If you get constipation, try using prune juice mixed with whole pears, kiwi and apple ( remove cores but skin only on the kiwi fruit) and blended to a juice. It really helped me with the addition of Movicol for the first week and the night before chemo. I had the juice mixed in the fridge and drank it all day, it helps the fluid levels and the regularity.
For diarrhoea you can use the Gastrostop constantly, also avoid foods that will aggravate it, stick to a bland diet (everything will taste bland anyway) apparently bananas, toast, rice and broiled chicken are good, avoid fruit with skin, whole grains, and anything else you are recommended to avoid for your IBS. Mind you, finding anything you can taste is an issue. I did enjoy hot chips, they didn't seem to aggravate the diarrhoea.
My diarrhoea started the day of the first Docetaxol and did not ease until the week after I finished, 10 solid weeks of it, keep your fluid levels up.
Gastropstop helped.
My gut is still very sensitive, so it may take a while to settle down, some other ladies have said the same thing.
Good luck with the next few months, don't worry about having anxiety attacks, bouts of depression or times when you feel you can't cope, just come on here and vent away. You will probably find most of us have gone through the same. Jennie - Hey @viking1, bloody hell - if going through breast cancer treatments don't give you anxiety/depression at some stage I don't think you'd be human!!! Be gentle with yourself - there is no medal awarded at the end of treatment for the least anxious BC patient!! I think it's great that you are getting help for depression but please please don't beat yourself up for feeling down. You are fighting BC and that takes an immense amount of energy and strength!!! You are brilliant!! Keep going, wishing you better drugs and minimal side effects. Xx Cath
- @Unicornkisses I am so sorry to hear you had to deal with the IBS from that drug ... I gather from my plan that I have it as the second part of the chemo for 9 weeks - so three infusions. This was a huge concern for me as I had terrible IBS last year, no warning, was wearing Depends and felt like staying in...no picnics in the park just in case! I expressed this in no uncertain terms to the chemo onc who then decided it would be better to do the 6 month chemo treatment but her Professor said no, never heard of diarrhoea being a problem, only constipation! So we went with the 18 week job of 6 infusions. Ergh!!! I am glad you survived it. The nexium is a good tip! Where are you in your treatment now? I hope near the end! xx
Thank you @iserbrown ... that is a good idea to get outside. The weather is bad but we do have sunny spells and a little wander away from the bedroom is a good thing! I managed some tasks today and felt much better after those kind people in the Solaris Centre. Amazing how positive interactions push us forward. Tried a short meditation in bed free app called Head Space my yoga teacher posted, did some laundry and wrote a text to a friend. Still hard concentrating on movies though I used to like this. Best wishes and hugs xxx
@viking1 - ten points to you, you've got through, analysed all your side effects and doing something about managing the side effects! Yes it is a long crap road but; keep the but in mind, this is for you! This is not a 7 sookaroo! This is a real trip that you are on! Good luck with sorting out the next round and hopefully as suggested already the Nexium, see what Onc team says, maybe a saviour for you. You are stronger than you think and your determination "...being in the present...not my head! ..." says you're winning!viking1 said:Hi Ladies,
Sorry for the delay but if I'm not on here it usually means I'm in the foetal position trying to 'flight' vs 'fight'. Heart scan was today .... woke at 3 am and was at hospital till 3pm. Frequent flyer miles clocking up! Thank you for listening and if you want to slap me for having a day 7 sookaroo, please do! I feel a fool with this damned anxiety which seems to have no clear reason for existing and has been absolutely crippling for no good reason - or tangible reason that years of therapy can divulge. Did do some mindful meditation at Solaris Centre and it was great. Looking forward to restorative yoga later on and being in the present...not my head! Love to all you stars xxx
Take care, take a deep breath and then another deep breath, pat yourself down and keep yourself in the present, head outside to soak up the surrounds, even just a sit on the verandah if there is no energy for a walk, soaking up the environment and concentrate on the end goal, being rid of cancer! Willing you along x
