Starting Chemo September 2015; join us!
Comments
-
Congratulations to all who have finished chemo.
Best wishes to Southern and Fidget for your surgeries this week.
I'm half way thru Taxol. Had Taxol #6 today along with Herceptin #2.
0 -
Met with a senior oncologist and moved onto the next phase of treatment yesterday: I started anastrozole (surprise --- the other docs had all been pushing letrozole) and my Herceptin-only treatments (surprise: had been told this first dose would be iv but it was given subcutaneously like the rest of the doses will be --- 5ml under the skin in my thigh.)She said the rash that is still flaring up off and on is a side effect of cyclophosphamide (Cytoxan) and will still take a few months to completely resolve. (telling me this months ago when it first started would have saved me so much anxiety and also the $ for the private dermatology visit). She agrees removing my remaining breast before any abnormalities show up would be wise, but I have to wait until 1yr after my first mastectomy, so next autumn.
I stupidly asked about prognosis: IF my heart holds out for the full course of Herceptin, and IF I stick with the AI (anastrozole or whatever), I've an 80% - 85% chance of still being alive in 5 yrs. Lower than I had expected and hoped --- but certainly much better than if my cancer had appeared before the age of Herceptin. Lots to think about..
0 -
Ozigran - looks like we have the same schedule, chemo sister. I had MX on 8/25, started AC on 9/29, and just had Taxol #6 today. The neuropathy finally kicked in this time - a bit of numbness and more tingling / burning sensations this evening. Previously it was more mild tingling, with no numbness. I am really hoping I can make it to 9 or 10 infusions. Best of luck to you on the long treatment process.
0 -
southern good luck tomorrow with your lx.
Fidget hope you have an easy surgery Friday.
Congrats to those finishing and moving on. As for me I am 7 weeks pfc, 10 of 30 rads done and I returned to work yesterday. I was weird and I just couldn't get into it. I tried not to feel overwhelmed but I haven't worked in 5 months. By the end of the day after driving home I was exhausted. The commute to rads, then work, and then again home from work is tough. Don't know how gals who worked thru chemo did it. And those with littles who worked just wow. Hats off to you all ladies and happy Wednesday!
0 -
Tessu - I don't think asking about prognosis was stupid at all. Mine isn't that great, and I'll ask once treatment is complete in 3.5 months. At 58 I have many financial choices to make based on those odds. (As I said to my husband months ago, "If my prognosis isn't good, I have "old age" money to spend!" Maybe a trip to Finland will be one of those splurges. ; ) I am sorry it was lower than you expected, but glad it's better than it would have been just a few years ago. Hang in there, brave one.
inSF - Your neuropathy at #6 is about what mine was. Are you taking supplements? I can't know objectively if they have helped, but while neuropathy has steadily advanced, it has advanced slowly. I was tickled to make it through dose 11 yesterday and hope to make it to 12. (MO reduced my dosage by 15% starting at #7 if I remember correctly.) Good luck to you and Ozigran!!
0 -
MinnesotaLisa: Thanks. I'll be 60 in March, so I also have a bit of "old age" money tucked away and a ton of places I want to visit
I guess I always knew my tumor was not a very good prognosis type, but I thought I had read on the net that prognosis was a bit better (some mega study out of Holland --- that I cannot locate anymore --- because my stupid brain is still so foggy even now 4 weeks PFC 
). I've been struggling with high anxiety throughout this treatment process and thus wasting too much precious time!) but have admittedly suffered anxiety problems way before BC, and luckily started therapy for them last winter. I guess I need to focus on the positive coincidences: I had just settled into therapy when this hit (I would have been even more of a basket case without that support); my sweet elderly dog has been by my side 24/7 (not sure that would have been so a year from now, she's quite old); BC waited until my kids were off to college and sort of self-sufficient; and this winter has been unusually "easy" while I was the weakest from chemo -- the least slippery it's been in years. (That's going to change very soon --- but I can walk without a cane now!) And, very very fortunately, I found this site and this womderful group of women warriors walking the same path. So I haven't had to struggle alone, and won't if I'm not so lucky, and the mets appear. Yup, I very much need to fight my stubbornly lingering fears with all these positives 0 -
Oh, I'm definitely finding that the fatigue and other Taxol side effects are cumulative. I got a cold a couple of weeks ago and am really struggling to fully kick it, which isn't helping. The neuropathy on my feet took a strong turn for the worse last week and after yesterday's infusion REALLY got bad. Numbness along the bottom (as well as some tingling) and my big toes are numb, tingly, and sensitive.
BUT, at least I got Taxol #10 in the books!
My husband took the phone call this morning scheduling my surgery. I'm having a BMX and immediate DIEP on March 18. It's a week later than I expected, but I'm sure that's fine. Somehow it's making the reality of it sink in a bit... something in me knows the time I have with my body the way it is has an end date.
tessu, I find those odds really strange! You had no nodal involvement, so it sounds like you were Stage I or at the most II, yes? Between the hormone and targeted therapies you're eligible for, those odds are usually posted as something like 95%! I have triple negative and, assuming no nodal involvement and Stage I, mine are 77% because all we have is surgery/chemo/radiation. And remember that those number also include the noncompliant patients who do follow through on treatment, much older patients who are in poor health, smokers, etc.
0 -
Thinking of those of you who are having surgery today. My BMX is tomorrow and I'm nervous about the recovery. Ugh.
0 -
edwsmom, you're gonna ROCK this thing!
0 -
Minnesota - Big conratulations on making it this far with Taxol. For neuropathy prevention, I am taking several supplements. I take 20 grams glutamine, 2000 mg DHA/EPA fish oil (based on a recent study with very promising results), 50 mcg B6, and 100 mcg B12. I don't take the B vitamins day before, day of, or day after. Since there is some research out there suggesting that strong anti-oxidants may interfere with chemo, I wanted to be cautious on that one. I went to see a naturopathic doctor to give me some additional comfort that what I'm taking is OK for my specific situation. I am also icing my hands and feet during infusion, but there isn't a lot of strong data on whether that is actually helpful in preventing neuropathy, and I'm doing acupuncture. I'm trying just about everything I could think of that doesn't have associated negatives, since I already have small fibre nerve damage (most likely auto-immune, since I'm not diabetic).
For edws, Southern and everyone with surgery this week - extra love and thoughts for you. Like others, my MX and ALND was way easier than chemo. It is very uncomfortable trying to sleep for a few days, but I think most people have really quick improvement. I do still have arm mobility issues from the ALND and tissue expander, but the MX part was easy.
0 -
CarolinaAmy: My tumor was stage 1c but there was an area of DCIS elsewhere in the same breast (so apparently my body suddenly likes to make cancer). My family history of BC does not meet the hospital's requirements for BRCA testing; I've been too brain foggy to figure out if I can get that somewhere else. I think the oncologist factored in that I had a lot of bleeding from the biopsy (radiologist insisted I NOT press the site; I got a sizable hematoma and god knows how many tumor cells spread through the blood). Then my surgery (and thus start of chemo) was delayed for two weeks because one of the imaging requests was overlooked, then the surgeon refused to believe I wanted no reconstruction ever just both breasts off (another week and a half delay, and she refused to remove the uninvolved breast). Oncologist said I have to wait till Herceptin is through before I can get the left breast off -- so late next autumn; time for a new primary or a recurrance there. Also, Perjeta for first treatment will only begin in Finland later this year, so my treatment was maybe a bit less effective than in the States? I think the oncologist factored all that in for her survival estimate. I'm still so brain-foggy that even with the notes I took, I'm not 100% sure of all her reasons. She wrote the numbers for me though, so that's clear. But hey it's better odds than without treatment
0 -
Congrats to everyone completing and going through chemo. It'll be one of the toughest things we do. Prayers for fast recoveries for the ones who are in surgery today and/ or the ones who have surgery coming up (tomorrow edwsmom).
I had my radiation sim a few weeks ago and my first treatment was today. It went smooth and it's great to have treatment only last a few minutes unlike the 3 hrs taxol treatments.
0 -
CarolinaAmy - WOO HOO on getting to Magic Number 10! That is awesome. I feel ya on the neuropathy - mine progressed from toes and balls of feet into the arches this past week.
And thanks for the valuable reminder that any stats include non-compliant patients and those not taking good care of themselves pre- and post-BC. Even at "only" Stage II, NIH stats for my specific profile are 78% five year survival. But you're right, I have a decent chance (never having smoked, having been physically active for years pre-BC) of being on a positive side of that!
edwsmom - You're going to do great. Keep us posted, we're thinking about you, Southern and all our surgery-bound warriors! xo
0 -
Hugs to all having surgery this week and to all the taxol warriors. MnLisa and ShopGal- hooray for reaching #10!!
I am 6 weeks pfc and am happy to say that I just started to feel some easing of my neuropathy. It is very gradual but the "burning cold" feeling in my feet is not as intense as it once was. I still wear thick socks and sleep with a heating pad at the foot of my bed but it is getting better. Hang in there to all who are experiencing this rotten side effect. I am getting acupuncture weekly but don't know if it's really helping or not.
I got the results of my scans yesterday and am relieved to say that it was good news. Pet scan was all clear and the suspicious spot on my illiac is still there - meaning it did not respond to chemo and is considered benign. Whew! I do has osteopenia so will me getting Xgeva shots and will begin taking calcium and Vitamin D. I am told osteopenia is common for women my age.
I will have a hysterectomy in a couple weeks then take Femara. Won't see my MO for 4 months. I am worried about the SE from Femara but so relieved to have the all clear right now.
Peace and prayers to all--
0 -
For you Ladies who are pushing through the end of Chemo and to you Surgery Warriors
Keep Going! you can do it. The hike out is long but your are almost to the car. One time I spent the whole last 3 miles clicking my keys for my car in the dark hoping I was at the end.
0 -
This is the hike out of the Grand Canyon in AZ. This was a breeze compared to Chemo
0 -
georgous!!
0 -
edwsmom hope you sail thru your surgery.
0 -
Sending healing vibes to everyone having surgery, rads, or chemo today and tomorrow (((((hugs)))))
Exercise: You hiked that? WOW!
Slept better last night. Deciding numbers are just that: numbers. Yes I will die sometime, but not today. So I plan to take the best care of myself that I can see what happens.
Very encouraged to be NOT usual: The nurse injecting the under-the-skin Herceptin warned that patients "usually" get a sore hard red area at the injection site that lasts a few days, "normal" SEs. Well, that was two days ago. Nope -- nothing there at all except thigh fat.
0 -
Just an FYI
I started Acupuncture a few weeks ago for my arm/shoulder pain and mentioned my hot flashes. They usually hit hard during the night, waking me up totally drenched in sweat (how appealing).
My acupuncturist informed me that there are "lady part" areas (no not what you're thinking..lol) that acupuncture would help with hat flashes. Hey, I was desperate so I told her to try. The needles were placed in the foot/ankle area and wouldn't you know it...it seems to be working.
Along with helping to relieve my arm pain, Acupuncture has definitely reduced but not eliminated my hot flashes and the severity. So, if its really bad ladies, it might be worth a try for you.
0 -
Congrats to everyone finishing Chemo.
Tomorrow is #8 Taxol for me.
Confused went for follow up with BS a couple weeks ago, had to see the NP instead. I was told I would have a mammogram in February (6 months after diagnosis) Just on right side, (BC)
I then had my first app't with radiologist last week and he said NO, they would not do mammogram or any additional scans until after radiation was finished. So I thought maybe I was mixed up. But my husband who has not missed one app't since this began in August, said that's what he heard also.
So last Friday I asked oncologist about mammograms, scans etc. He said he agreed with radiologist, NOT until I was done with radiation. OK but I wont be done with radiation until approx. first of May. That's 9 months from diagnosis, this scares me.
Is this normal? Anyone here having mammograms or scans done b4 radiation begins?
0 -
El Tigre- I meet with the radiologist last week. Was hoping we could compare notes since we are both stage 3 with lymph node involvement. My doctor said 6 weeks of radiation. No boost or what he call a speedy process. wants me to take all 30 treatments each day for 30 days. Also said they would radiate 4 places, area they did lump removal on, lymph node area. neck area and inside breast area were lymph nodes are in my chest. He said he want to be very careful. I will go on March 1 for simulation. which will be approx. 2 weeks after I finish chemo, if the next 4 Taxol go as planned. Then he said they wouldn't start radiation for another 2 to 3 weeks. So he wants to wait approx. 4-5 weeks after chemo to start radiation?? He said he wanted me to recover from chemo b4 starting. No mammogram or scans until after radiation.
Would love to know if this is similar to what your radiologist has order. Hope radiation is easier than chemo. And hope you are doing OK
Tina
0 -
Tina - yes I'm doing good. I hope you are doing good too! Hope taxol #4 goes smoothly.
My chemo ended 12/31 ( take that insurance company) . My sim was 1/13 (2 weeks after chemo ended) & first rads was yesterday 1/27 just shy of 4 weeks, i am signed up for 28 visits
. I heard 4-6 weeks after chemo is when rads starts. So that seem normal. I bet you can sweet talk your way into it sooner.They are doing 4 areas supraclavicular nodes (collar bone area) and the chest wall. From yesterdays treatment it seems ot be
1-collar bones nodes
2-head on chest wall
3-left armpit angle
4-angle from the right side just missing my sternum
No word on scans. I think that I will be getting together with the doc to discuss follow up scans after an echo cardiogram in march. I know they sometimes do boosts to the area where the tumor was, but it depends on the RO and the skin condition at the end of rads.
Tina, Do they do your treatments on the weekends? Mine are only weekdays
Alicia
0 -
I'm a couple of days ahead of El Tigre: I finished chemo on 12/29, and started rads on Monday. My rads are similar, except that I have a couple extra photon (?) blast on the inner quadrant. They're more targeted and don't go as deep, which my RO chose because that spot is directly over my heart. 25 zaps, plus 5 boosts. Weekdays only.
Tomorrow, I get a mammogram on the non-cancer side. When I was diagnosed last July, they biopsied two spots on the right that ended up being nothing. The MO thinks removing the good breast at the time of reconstruction is a sound choice. If they want to remove any of the nodes on that side, I will throw a tantrum that would shame a napless toddler.
0 -
Anyone in radiation have a bolus? I had the plastic rubbery thing today in rads. I'll get it every other treatment. I swear I could feel the difference.
Tina, I forgot to mention that I'm on the breath hold machine.
0 -
Scotland - "Throw a tantrum that would shame a napless toddler" is now in my permanent vocab.
LOL.
0 -
El Tigre: I have a bolus every other time. The RO said I'd have it for a total of ten times. I don't think I can tell a difference with the bolus, but am I over analyzing every twinge to determine if it's a rads SE. I hold my breath, but there's no machine.
Lisa: glad to amuse
0 -
I'm going to be getting a drain withy surgery. What did you ladies find worked best to hold the drain?
0 -
they safety pinned mine to my bra. In the shower they gave be cloth netting that I clipped a small section of and wore it like a belt with grenades lol
0 -
Tina I started rads 5 weeks pfc. Mine was delayed due to the docs taking off the last 2 weeks of the year. I also had a similar situation about different opinions about when to do mamo. Bs said after rads both breasts. Then his nurse called me to say they may need to do mamo on non cancer side because my last mamo on that side was 10/2014, but I had an MRI on both breasts 7/2015. I finally had ro talk with bs who then both agreed after rads both breasts.
0
