Starting Chemo March 2015

KBeee

unless someone logs on yo you, they will not see the secret group. One word of caution.... Make SURE you are on that group's page before posting. A few of us from my Sept 2013 group posted things meaning them for the group, but accidentally posted things on their timelines. Things like nipple recon and such aren't meant for everyone to see! So just double check before you post. :

SpecialK

trvler - true about the pCR with ER+, but this is not universal and there are reasons for it. ER/PR+, Her2- is the most common arrangement of hormonal receptors and Her2 status. Due to this there is an array of grades and large numbers of people. Triple Neg and Her2+ are often higher grade and more aggressive - chemo can be more responsive. The good news is that you have adjuvant hormonal therapy available.

For those you need to increase RBC/Hgb eat more protein - red meat, eggs, fish, chicken, spinach, fortified cereal - really load up.

Jackbirdie - this is for you, so you don't feel alone, lol!- I tried to paste today's CBC done in prep for next week's MO appt, but Mr Phone is not cooperating. Here are the highlights 4 years after finishing chemo:

WBC 4.6, RBC 3.97, Hgb 12.8, platelets 189, ANC 2.8

wpmoon

I'm triple positive, but my ER status is only 5% if I remember right. That makes me a little worried with all this talk of a higher % is better. But... I suppose there's really no "good" diagnosis.

SpecialK

wpmoon - if your ER % is lower, your biggest benefit will come from your grade susceptibility to chemo and the targeted therapies for your Her2+

SueH58

special--did your counts go up at all? That's about how mine looked prior to treatment #3.

Katy - I think you've found a new forte -- naming things! Love the new name, but because it's so ominous does it still need to be secret? If so, can someone please PM me the link? Thanks!

SpecialK

Sue - I'm 4 years from last chemo and that CBC is from today, lol!

wpmoon

does anyone still have pain at their surgery site? It's been 6 months and my breast, arm, and shoulder really hurt. Kinda making me worried that something is wrong but my surgeon said it could last a long time, or it may never go away. So frustrating.

SpecialK

wpmoon - get a referral for some physical therapy, preferably with a lymphedema certified therapist.  You may be experiencing frozen shoulder, cording, or axillary web syndrome - or just soreness.  At the very least they can show you some stretching exercises that are safe for those who have had lymph nodes removed.

wpmoon

thanks special! I'll look into it!

Jackbirdie

Whitney- I try not to mention it often, as I know many here have yet to have their surgeries. But since you are experiencing pain, I will share a bit.

I had BMX 12/18/14. I am still in a lot of pain. I don't believe it is LE, it is not localized anywhere near the SLNB site. It is all across the scar line and under my arms where the partly painful- partly numb "lemons" are. Dog ears the surgeon left. (And he did warn me of them).

I had exceedingly high pain levels for 60 days after surgery, and still having more pain 24/7 than I can deal with, without the use of heavy pain meds. Having both bronchitis and pneumonia in the last 4 months did not help, and the spasmodic coughing causing the clenching of torso and pec muscles made everything so much worse.

I have consulted with a certified LE specialist, and it does not appear to be that, unless it is a more rare case of breast or truncal LE. I had already begun treatment with a PT who has special training with mastectomy patients and dealing with scar tissue management. She is very knowledgable, and her mother is a 16 year stage IV survivor, so she "gets it". Working on the scar tissue, breaking it up, is a slow and quite painful process. Sometimes I cry for the whole 45 minutes. But improvement is slowly being made.

She, and others, have warned me that in some cases post mastectomy pain can last for years and in some very rare cases it never goes away completely. The pain med situation will come to a head sometime after chemo I am sure. I use compression garments of various types, from official compression corset type things to tight knit tanks and that always helps.

I feel nerve pain, (but less than before) , achy pain all along the scar line and 2-3 inches above and below, phantom pain where there is no breast anymore, but no significant pain under my right arm, except the aforementioned lemons. And that is bilateral. Not related to SLNB. I assume.

I have recovered pretty good range of motion on both sides. But that does need constant work and stretching or it slides back a bit.

Since I had already made some inroads with the scar tissue work, I decided I couldn't handle simultaneously seeing the OT LE expert. So I will circle back with her after the PT feels she can do nothing further.

From what I've read, recovery is very individual. Some gals get up and go and never look back after 3 weeks. Others suffer a lot longer. Surgeons don't like to admit it, talk about it, or treat it. They are the "one night stands" of the medical world. Cut and run. They cause it but don't know what to do about it. I considered seeing a PS about scar revision. That possibly could help. But I can't bear the thought of one more knife right now. There is growing evidence that many more women have this problem than anyone wants to admit.

I don't know if any of this will help you. It may discourage you, and I'm sorry if it does. I would get to a PT or OT asap, and make sure between them you cover both the LE and scar mgmt issues.

PM me anytime if you want to talk more about it. I'm so sorry you're in pain and worried. I don't think the pain is indicative of a "problem", other than nerves trying to heal and not doing such a great job at that.

Jackbirdie

Here is Tutti, helping me with my hydration this morning.

ksusan

What a darling kitty!

Italychick

Whitney, I have some soreness still five months out from surgery. One exercise I do is lift my arm and then do my hand in both directions in a circular motion, flexing at the wrist. I haven't seen a therapist yet, but have plans to. Too many doctor appointments.

It is in the area between my chest and armpit, the little muscle/fat section in front where your chest joins your arm. Of course, lol, my bike riding helps. Just got back from 27 mile bike ride, feeling more like myself just in time for last infusion next week. Feet and hands still jacked up though. Feet the most. I feel like the exercise helps me stimulate my lymphatic system to move more

molly1976

I'm still sore at the lumpectomy site and sometimes underarm, too. It seems to come and go. I've mentioned this to all of my doctors at least once and everyone acts like it's normal. My surgery was almost four months ago.

greenae

hi ladies

Wpmoon and katy and anyone with scar and range of motion issues. I have been going to Lymphedema Certified (LANA, and a bunch other letters after her name) PT twice a week for the past 5 weeks. I have 6 axillary cords and 5 weeks ago couldn't lift my left arm above shoulder height. She has helped immensely with stretching, exercises and my range of motion. She has released one cord and is still working on the rest of them. I am hoping some will snap with my revision surgery. She has taught me self Manual Lymph Drainage (MLD) and I have gained 35 degrees ROM. I can again lift my arm straight up without pain, after stretching, altgo its still tight. Anyway, I definitely recommend seeing an LE LANA PT if you have Any issues after mx AND/or SNL/ALND. I do not have LE, and hopefully won't get it, but these cords are so annoying, uncomfortable, and ugly, to boot. I agree, Katy, the surgeons are so busy ridding us of the BC, the aftereffects get forgotten, but the aftermath causes us pain and problems. Every MX/SNL/ALND pt shd be seen by an LE LANA PT!

Hugs! Arlene

neverthought

I wondered what SpecialK thought about the articles below.  My MOs PA said she never heard of.  But wish I had known before I started chemo.  I did get some hand foot redness/peeling/numbness after first infusion but think it was the antibiotics had to take that caused it.  But I also was taking zantac at the time.

Correlation between docetaxel-induced skin toxicity and the use of steroids and H₂ blockers a multi-institution survey. http://www.ncbi.nlm.nih.gov/pubmed/21698408  Article about H2 blockers such as zantac increase incidence of hand/foot syndrome in those treated with taxotere.  Please note - if I read this right, it didn't show any connection with use of steroids and h/f syndrome, but a strong correlation with H2 blockers (antacids).

Prevention of palmar-plantar erythrodysesthesia with an antiperspirant in breast cancer patients treated with pegylated liposomal doxorubicin  (SAKK 92/08). http://www.ncbi.nlm.nih.gov/pubmed/24656636  Article about using antiperspirant on soles of feet may help prevent hand/foot syndrome in those treated with adriamycin.

My MO is very nice and seems to very knowledgeable.  The PA very nice too but not so knowledgeable about pharmacology.  Anxious to get my post chemo labs back in hopes I can quit worrying so much about lowered immunity and anemia.  Still weak as a kitten.  Tried to do usual yoga routine but after almost 5 months it was pretty laughable and sad at the same time.  Didn't realize I had gotten so stiff and weak.  Lots of work to do.

 

Italychick

I wonder if there is an alternative to taking the steroids. One woman said her doctor switched her to Claritin instead, but I'm not sure if that was just anecdotal and only applied to her. I would love to not take steroids for my last round, but too scared not to.

greenae

Hi Theresa

I hate the decadron, too. But it really is necessary for the Taxotere. Please don't skip it. It is for the fluid retention and serious allergic reactions that the Taxotere can cause. Maybe your MO can lower the dose or taper you off? I tapered off because the crash gave me huge headaches my first round. Good luck!

Hugs!

Arlene

Italychick

I don't think I am getting taxotere for my final round, only carboplatin and Herceptin. So I am going to ask, couldn't hurt. I won't do anything she doesn't recommend.

Trvler

I am not taking Taxotere but I have always wondered why, if you don't have an allergic reaction the first few times, they keep giving you the the steroid? Actually, I though Benedryl was for possible allergic reaction? Do Taxotere people not get that?

greenae

Hi Trvler

We get both IV on infusion day, on Taxotere. It's for the fluid retention, as well as allergic reactions. You can have anaphylaxis the first 2 times (life-threatening allergic reaction), and an allergic reaction any time. The fluid retention can be significant, anything from puffy ankles to shortness of breath, and weight gain. My last round, i dropped 6 lbs in a week. And it sure wasn't from watching what I eat.

Arlene

SpecialK

Decadron (dexamethasone) also helps control nausea - I received Benadryl for all six Taxotere infusions, Decadron only the day of infusion for the first three until I developed a rash, then received before/during/after steroids for the remaining three infusions.  The last couple of tx I halved the steroids taken after chemo and took them longer to taper and try to avoid the crash since I was near the end and already very fatigued.

slothabouttown

Humorous story- kind of. So you all know that I work in an animal shelter. About a year ago we took in a bunch of sick persian kittens from a bad breeder. As a result of handling them I got a ringworm spot on my arm. It was persistent and got pretty big so I went to urgent care and got an oral antifungal medicine which cleared it up (In hindsight I keep wondering if I couldn't kick it cause of the lurking BC) any way, last week I saw a redness starting in that same spot on my arm.. I was at the hospital for radiation and so I stopped by the MOs office to have her take a look. I didn't want it to get out of hand again and was worried I might not be able to fight it if my immune system is still recovering from chemo. I ended up in a room with two triage nurses explaining this history to them and why I was so concerned about a dime sized spot on my arm. They told me they'd never had to treat "worms" in their office before and both looked pretty creeped out. They kept wondering with each other how you would go about "getting the worm out" I had to explain this wasn't a worm, it's like athletes foot, it might need a culture and a prescript strength topical ointment. They said, "okay then you should do that asap!" I guess ill try to find a dermatologist next week. Telling myself these are chemo nurses and they just have a very specialized sphere of expertise!

rleepac

You don't even need a Derm for that. Your primary care can write the script. Or you can treat the area with about a 25% bleach solution. Burns a little but kills the fungus!

ksusan

I got oral steroids and Benadryl (not drip). My steroid dose was reduced on my second visit (not by my MO, but by a visiting pharmacist with Ideas). That's when I had the beginning of an anaphylactic reaction to taxotere.

rleepac

It's 9:30 and I'm still in bed. I did get up and take a shower, have 3 bouts of diarrhea, drank my protein shake, took all my meds, and then crawled back into bed again. I hate days 3 & 4!

I'll just be here feeling sorry for myself and staying close to the bathroom all day.

Jackbirdie

so sorry to hear it Bekah. Sometimes bed if just what we need. Try to keep your fluids up. Thinking of you

Italychick

SpecialK, any thoughts on reducing steroid since I will only be doing carboplatin and Herceptin my last round? I plan to call the MO and ask, but was wondering what thoughts you have.

Also wondering if I should ask to ditch the Neulasta shot this last round since my white blood count has stayed twice normal through the whole process.

Rode 27 miles yesterday. I can't wait for chemo to be done so I can get back to some semblance of normal.

SpecialK

never - I am not familiar with either of those studies, but they are interesting.  One thing to keep I mind with the second one - the participants are metastatic, so are less likely to be "chemo naïve" - they may have previously had other chemo agents, hormonal therapies, and potentially less healthy immune systems, as well as larger tumor burdens, at the time of chemo - all of which may contribute to more intense side effects.

Italy - it is common to skip the last Neulasta, particularly if your counts have been decent - certainly less SE the better.  Also, are you taking before/during/after steroids?  If so you might just ask for the day of one.  I actually did that with the first three infusions, then had to switch to more due to a crazy rash.  My MO doesn't necessarily subscribe to tons of steroids unless you show you need more.

 

Beachbum1023

Hi Special K, I am jumping in to ask a question. I finished Taxol on 11/25, then surgery, and rads. But I gained 25 pounds and can't drop any of it. Any hints that may help? Thanks, Cheryl