Starting Chemo January 2015

Cherylfg · December 2014

I am looking to see if anyone else will be starting chemo in January 2015. I am getting my port placed in the last week of December and then I'm starting chemo on January 2nd. I will have 4 rounds of Adriamycin/Cytoxan, followed by 12 rounds of Taxol. I think it would be helpful to share our stories as we go through this.

I have been reading a lot on breastcancer.org but this is my first post. Reading everybody's stories has been really helpful.

dimccleland · December 2014

Hi cherylfg, in answer to your question, me!!

I was only diagnosed last week with IDC - the tumour aka "The Beast" is 8cm big!! I saw my breast surgeon today and she has recommended a course of chemo and then, depending on what results we get, either a lumpectomy or a mastectomy.

I'm having my PET scan on Sunday the 21st and will see the oncologist on the 23rd. The recommendation from my breast surgeon is that I have the first round during the first week in January. I have no idea yet what the drug combination will be, whether she will insert a port or how many rounds I will have - guess I will find that out next Tuesday.

Look forward to reading more of your posts and I hope all goes well when you have your port placed xx

knmtwins · December 2014

Hi January chemo ladies. I had HER2 2 cm cancer, so I did pre surgery chemo which included treatments with Perjetta. When I had surgery6 months later, there was no more cancer, so ... I'm proof chemo can work. For some it is quite easy others it stinks. Ladies, this list will grow for the next few months and it was nice of cherylfg to start it. I recommend you all go into your profiles and update them to say what type of Breast Cancer (BC) and what your treatment plan is with dates. I found that quite helpful in the July one which I belonged to, because there are a few different treatment regiments and most symptoms are date dependant within your cycle, for example, constipation is normally the beginning few days, if on Perjeta, diareah might be an issue once constipation is over. For me, July 16 was cycle 1 day 1. Good luck!

Cherylfg · December 2014

Hi dimccleland and thank you for joining the group. I hope your PET scan and your visit with your oncologist goes well. I just found out all of the details of my chemo yesterday and I found it really helpful to know everything.

knmtwins-thank you for encouraging words! I have found enormously helpful to read everybody's stories on here. And, thank you for the tip about our signatures. I have mine set to public so I'm not sure why they didn't show up.

I'm having a CT scan (is that different than a PET scan?), a bone scan, and a MUGA scan this week. My tumor was becoming lymphovascular and my Onc just wants to make sure I don't have any other tumors. The MUGA scan is to rule out any underlying heart issues since ACT is so hard on your heart.

Edited: My signature is showing up on this post, so hopefully, it is fine now.

dstar · December 2014

Cherylfg,

We are chemo twins and that is too bad but I am so happy to have someone to talk to about treatment. I think I am going to bore my friends and family out of their minds with all the medical information but I still need to process!

I will have my port placed on Christmas Eve, then the same scans at the end of the month, starting the same chemo protocol on Jan. 7. My tumor was 14.5 cm. Note to dimcl.: the docs thought it was only 8 cm from imaging. Turned out to be larger. I chose not to have chemo first but started with surgery, just wanted that out of me. Turns out for me that was the best choice. I had weird, lobular cancer with tentacles and tendrils curling throughout my breast. My mastectomy is healing well and had clean margins. I am a lucky girl and had a great surgeon. It could have gone really wrong too.

Anyhow, I will post updates on all my procedures. Meeting with my Radiation Onc. tomorrow. Then a few precious free days before my next procedure. And a CT scan is somehow different from a PET scan but they kind of look at the trunk of the body. John Hopkins has a great site too. I think you can read about the different scans on this site.

Good Night.

Cherylfg · December 2014

dstar- I'm sorry you are also going through this but I'm glad we are able share the journey. Good for you for advocating for yourself. I've had to do that a few times and it definitely helps.

I'm at the clinic now waiting for bone scan. I had the injection early this morning but it takes 3 hours for bones to absorb the contrast. Hopefully, it all goes well and the scan is negative.

My chemo start date is January 8th. I'm glad to finally have a start date because that means there is an end date!

dstar · December 2014

cherylfg-

Hope everything is going well for you and everyone is being kind to you, maybe you are having the scan now? Good to know about time it takes for the bone scan. The nurse gave me a lot of info that I promptly brain-dumped. When will you have results from your bone scan? It is hard to wait. Do you notice that in the oncology dept they don't try to soften the blows anymore? It's refreshing but kind of intense.

How much met. did you have in your lymph nodes? Your Dx says 1 to 5 nodes involved? And how did the docs determine that it was becoming lymphovascular? Seems like aggressive chemo is the way to address that? Yes, starting means ending! I got a calendar and will start marking days off when I start. Someone in another thread said it helped them keep it in perspective. OK, I will let you know what my radiation onco has to say about why chemo and radiation are effective together and what he recommends for treatment.

And to dimccleland: I think that if I had a real shot at shrinking my tumor with chemo and only needing a lumpectomy, I would have taken it. More of left of me. A mastectomy is rather shocking but not terrible. I don't mind at all being unilateral, it's strange but OK. A prosthesis will fix me right up for the time being and I am happy to still have my right breast. I like that the skin still has feeling in it. I had strong sense of how large and strange my tumor was after the biopsy and saw no reason to reason to delay the inevitable--wanted to start healing.

OK, signing off for now. d.

Cherylfg · December 2014

dstar- the bone scan went well. The first five minutes were a little hard just because the machine is really close to your face while it scans you. I just closed my eyes and counted backwards from 500. I don't know why that helps me but it keeps my brain distracted enough that I don't think about the scan. I did the same thing during my MRIs and it was really helpful. The nurse also played music and that helped too. I kept thinking that by the time the song was over, the machine would have moved further down my body. I have a CT and MUGA scan tomorrow. Hopefully, they go as well.

I only had one positive lymph node and the tumor was microscopic. Of course, I was hoping for none, one is better than more. The pathologist determined it was becoming lymphovascular during the biopsy of my tumor. It was starting to break into vessels seen under the microscope. The vessels are associated with an increased risk that it is spreading. My med onc did say she would be surprised if it had spread but she wanted to do bone and CT scans just to be sure. The chemo will squash any other microscopic tumors. I will also have radiation when I'm done with chemo. I'm interested to hear what your DR has to say about it. When do you see him?

Did you have any genetic testing done? My mother had inflammatory breast cancer when she was 30 so I had the full genetic panel run. Thankfully, everything came back negative. My tumor is just a fluke and is not genetic.

A friend sent me her wig today. While I'm grateful to have it, I sort of hate it at the same time. It makes everything feel very real.

RV6gal · December 2014

I am actually getting my first round of chemo on Dec 29. I thought it might be okay to join this thread?

Tennisfan · December 2014

Bonjour! Happy to share experiences with you as I too am starting AC in January... I am also waiting to hear if I will be part or not on a study about the use of Herceptin in low positive HER2...

I am getting my ovaries removed on January 8 and hope that 8 days will be enough to recover and start the next leg of the journey.

I have to say I am quite eager to start... So I can finish!

Looking forward to sharing tips and tricks if anything can help others... As a starter, my oncology nurse gave me a thorough document about coping with side effets, and was of them was to purchase this special coating for nails that you can buy on Amazon. Not sure if allowed to mention brands but private message me if you are interested in the name. Apparently it keeps your nails healthier but you have to use it even a few months after chemo is done. I am curious to see if anyone else has heard about it?

Also, I attended a lovely Look and Feel better workshop two nights ago and the ladies highly rrecommended massaging our scalp with oil on a regular basis - I had not heard that before so I am going to give it a try when I loose my hair.

Finally, I was fortunate enough to be back on the tennis court after 4 weeks (not serving right away) with my PS consent, and did a bit of physio to ease my range of motion, which is pretty good now after 8 weeks. However, a friend just sent me this lovely stretching routine that I would surely have used if I couldn't access physiotherapy so I thought I would share. To my great delight, I was able to do all the exercices prescribed without having followed the video before, but they surely resembled the exercises given to me by the physiotherapist. Of course, you need to discuss ANY physio or other plan with you PS first, especially if you have tissue expansers or implants. Watch www.breastcancerrehabilitation.com/rehabilitation.html

And oh, I forgot to mention finishing this awesome book highlighted in another thread, called Anti-Cancer, by David Servan-Schriber. It talks about everything from the importance of positive attitude to nutrition to exercice - a must read considered a bit as one of the bibles by many cancer survivors...

Hope this helps and... Lovely meeting you January sisters virtually!

greatjourney · December 2014

Hi RV6GAL,

Do you know how many chemo session will be administered to you. We almost have the same findings.

Regards,

Mariz

RV6gal · December 2014

Hi greatjourney, we do have very similar findings! I will be getting FEC once every 3 weeks for 3 doses then Taxotere for the final 3 doses. I will have radiation and hormonal therapy following chemo. I just dont know yet how many

Lillp07 · December 2014

I have just been to my chemo information seminar today. I start FEC 5 Jan and have my port placed 30 December. I am needing to get a wig as the nurse and doctor said i will loose all my hair. Possibly eyebrows and eyelashes too.

dstar · December 2014

Cherylfg,

Thanks for all the info about the bone scan. I may take a little Ativan to help with claustrophobia. Your counting exercise makes perfect sense to me. I will try it too. No genetic testing yet for me but I am scheduled in Feb. Both my mother and sister had cancer: pancreatic and non-Hodgkins lymphoma. There may be some genetic link. Seems worth exploring as long as insurance foots the bill Inflammatory breast cancer seems very serious from what I have read. Did she make it through, your mother? I lost mine at age 17 but my sister was treated successfully. It is strange to walk in their footsteps. I would prefer some other sort of legacy.

Spoke with my radiologist onco today. He is kind of dreamy, actually. It's like a little sweet after a LOT of bitter. Hmm, but I'll take it. Something to look forward to after chemo. They have to use 2 physicists to line up the angle of the beams exactly to hit your chest area but miss your heart and lungs (mostly). Welcome to the future. The machine swings around you. Not claustrophobic. So the rads will start about 3 weeks after chemo is over because they want the drugs out of your system. Then six weeks of rads daily, I forgot to ask if it is Mon through Friday or 7 days a week. The appts last about 20 minutes. What a royal pain. The nurses are like, yeah, then you can head off to work afterwards. It's just that simple! Grab a coffee and go! Side effects: burnt skin, fatigue, perhaps some temp inflamation to upper lung that can cause a cough, thickening of the lymph nodes in the upper chest under the clavicle. So maybe lymphodema. The onco nurse is going to set up an appt with a PT to go through a teaching about that with me and some exercises to help. Talked to Dr. Wonderful about why we have to do both chemo and rads. He said the rads clean up any C cells the chemo leaves behind, studies have shown. In my case, increases survival rate by another 15% So, I guess we are all fighting for those percentage points to put between us and cancer re-occurrence.

Hey, I am going to try to make an appt with my dentist before chemo starts. That was suggested in one of my info packets. Seems that chemo is hard on the gums too, some develop mouth sores but it is good to have your gums cleaned b/f you start to help prevent bad stuff. Then the dentist can give tips to help with chemo mouth. Uhg.

And I hear that about things getting real. I look at my little scarf/ wig catalog and it just makes me sad. Lose my breast, lose my hair. Some say its vanity, but I don't think so. It's disorienting. I am going to dye my hair platinum blond when it grows back in. Yep.

Something interesting happened today though, a lot of my anxiety went away because now I know the whole process. Finally starting to trust my cancer team. Just going to sit back and let them do all of the worrying and planing instead of me. Not going to read about every side effect, just gonna deal with anything in front of me. It's hard to hand your life over to others.

Night.

mommacat4 · December 2014

Hello cherylfg,

thank you for starting this thread. It is nice to hear from people who are asking the same questions I am and getting answers from others who are one step in front of me.

I think the worst part for me is the waiting and the not knowing. My onc requested a preapproval from my insurance company for a PET Scan. It was denied, something about needing a peer to peer review. That is where the doctors at the insurance company and my onc discuss the reason and need for the PET Scan. I did some calling around to insurance company and back to dr office to find out why it was denied and how we can get it approved. After leaving messages for the scheduler and the nurse I figured it would be tomorrow before I got a call back. Nope... my onc himself called me back while he was at the airport on his way to teach a class at a cancer center in California.

He said the PET SCAN will show active live cancer cells in any part of the body. They will light up like light bulbs. And insurance companies don't like to pay for them if they can get away with only paying for a CT scan and a bone scan. I had my CT scan on the 15th and have not gotten the results back yet. I don't know about in aany other state but here in AZ the doctor's would rather give you results in person than over the phone. I imagine it has something to do with the HIPPA laws. (Privacy policy).

My bone scan is scheduled for December 26th. I going to have a port put in bit have to wait because I have an infection in both breasts. The bs doesn't want to take a chance of making the infection any worse. I am ony 2nd round of antibiotics for the infection. I am taking 2 different antibiotics for it. It is working but slowly.

I do not know exactly what day I will start my chemo but onc said I will have 5 months of chemotherapy. I already spoke to the radiation onc and he explained everything to me and I will have 34 rounds of photon radiation Monday through Friday 5 days a week. I don't really know too much about the side effects of the chemo other than the most common known, hair loss, sick to stomach and vomiting, and I found out by reading on this site that it effects nails too. I think I am still more afraid of the radiation than the chemotherapy.

Tstar,

thank you for the tip about the dentist, never thought about that.

Does anyone know if cancer and or chemotherapy effect eyesite? It seems that my eyes are getting worse and they are already so bad that I can't wear contacts because of the difficult prescription I need. And my eyes are very light sensitive. Have been for many years.

Well, I should try to sleep. It is almost 4:30 in the morning and I haven't been able to get to sleep yet. This (cancer) mind never stops.

Have a good night everyone

mommacat4 · December 2014

Hey cherylfg,

How long did the bone scan take after the 3 hour wait and did they have you in any weird positions? The reason I ask is because when I had my CT scan they had me on my back, legs bent over this foam triangle thing and my arms over my head. It is nearly impossible to raise my arms over my head because of the reconstruction going on. And my recon surgeon said not to be stretching over my head and not to be reaching too far out for things.

Cherylfg · December 2014

RV6gal- Yes, please join us! I'm sorry you are going through this but glad we can share it. I have found it really helpful to share this.

Dstar- I'm glad your DR is a dreamy. We all need some sweet after so much bitter. I really like my DRs and trust what they have to say. I've found all of the DRs and nurses at my clinic to be incredibly kind. My mother did not make it. Her cancer was very aggressive and spread rapidly. I was 5 when she died, which has been extra hard for me lately. My oldest son is 5 and it is surreal to me that I was the same age when my mom had breast cancer. Sometimes the hardest part of this disease is watching how scared it makes my children.

Mommacat4- that is interesting about the PET vs the Bone/CT. I wonder why they DRs don't just order PET scans if they are better? Is it because of insurance? I hope your infection goes away quickly.

For my bone scan, I also had to lie on my back with my knees supported. My arms were loosely resting on my stomach. The whole thing was about 30 minutes. I honestly can't remember if I had to raise my arms. All three scans are running together in my head. Definitely tell them you can't and they will work with you.

My DR's nurse called with the results of my bone scan and there was no sign of disease anywhere. That's a huge relief for me. I hope my CT results are also good.

RV6gal · December 2014

Thanks Cherylfg, I agree that it is very helpful to share our experiences. It sucks to be here but since we are its great that we have that support. Congrats on your bone scan news. I got the same info on Wednesday. I am also waiting for the results of my CT scan. Best wishes to us both with that

dstar · December 2014

Congrats on clean scans, Cherylfg and RC6gal!

Welcome Tennisfan! My mother was a huge tennis player; it's wonderful that you are back on the courts, doing something you love. I wish that for all of us. Thanks for all your tips. I am going to look at those stretching excercises and I will take a look at that book. Sometimes I have info overload! I got a book called the Cancer Fighting Kitchen. It has a lot of suggestions about what to eat when you are going though chemo to stay healthy and feel better.

Rosiesride · December 2014

dstar and other January chemo ladies...I wish you all strength and peace through your journey...I guess I am " creeping" but I am still learning from so many of these boards!

I was dx last December 18th and finished all treatment, chemo and rads by august 13 th 2014...so I wanted to chime in and just tell you that it is all doable and it does end...I found hidden " blessings" from this storm...strengthened relationships, friendships, perspective changes that enhanced life...worry less and love more...seize the days, the sunrise, sunsets and moonrise ( my favorite thing!)....on sleepless nights I perused Pinterest inspirational quotes that helped me, of all things...so I will leave you with my favorite one:

Blessings to you all, especially as you go through this season knowing what is ahead...my dx came a day after my birthday, the week before our school is out for Christmas break ( I teach k)....so much celebrating in the midst of heartache...but find the hidden blessings...they are there...peace to you all! Rosie

Ps...drink lots of water, fluids...staying hydrated helps a whole lot!!

mommacat4 · December 2014

rosiesride,

thanks for your inspiration and belief. Thank you for sharing with us newbies.

Cherylfg and rc6gal, congrats on the outcome of the scans.

cherylfg, I completely understand how you feel about your children in regards to watching mom fight this fight, I haven't even started chemo yet but I am afraid that at least 2 of my 4 children will freak out. My children are older than yours but my 13 year old son has bi-polar and adhd and my 15 year old daughter has autism (high functioning) but it still has it's effects. My other 2 daughters are 18 and 21. They are both in college, living here till February them moving into an apartment together. They both work so they aren't here much.

I also worry about my girls getting breast cancer. My mom was dx at age 72. They did mastectomy and got it all at stage 1. Now I have it. I have 3 daughters. ....my mom passed away this past June from natural causes, not from cancer.

Lillp07 · December 2014

Thank you so much Rosie. I love that quote and will save iton my desktop. God Bless

Cherylfg · December 2014

mommacat4- Did you have any genetic testing done? My mom had breast cancer and so do I but I am not gene positive. It was just a crazy thing that happened. But, being gene negative means my boys don't have an elevated risk of breast or pancreatic (they are linked genetically), which has been a comfort to me. Does your clinic have a social worker or child life specialist that you can talk to about ways to help your kids? My surgeon gave me a children's book, Chemo Cat, to help explain chemo to my kids. We haven't used it yet but I'm hoping it will help them understand the process better.

RV6gal- Congratulations on the negative scan! That is great news! Do you know when you will hear about your CT?

We spent the day with some friends and it was really nice to be able to just relax a little. Of course, we talked about cancer but it didn't feel like it was the focus of the day. I don't know about anybody else, but I just feel like my head is so full of cancer, tests, chemo, everything, that it makes it hard for me to think about anything else. It was nice to sort of take a break from it.

Lillp07 · December 2014

Cheryl, cancer is all I talk about. I can't stop. My husband, friend and mum must be sick of me talking about it. I can't stop. I wish I could.

Cherylfg · December 2014

Lillp07- I agree. It is all I can think about and I feel like I talk about it all the time. I do, however, feel like I talk about it less than I did a few weeks ago but there are days when it is "cancer talk" nonstop. Maybe it helps your family and friends to also talk about it. I know my friends and family also need to talk about it and it helps them feel comfortable asking questions if I bring it up first. Either way, come on here and "talk" all you want! We are all going through this and we all need to talk and talk and talk about it.

dstar · December 2014

Lillp07,I am with cherylfg on that one, bring it all here, write your heart out about cancer, we can all listen to one another and be that relief valve. It seems to be a natural part of the process of of learning to deal with the cancer, trying to shut it down seems impossible to me. But I do know that I have stressed out friends and family with relentless waves of cancer details and do try to respect their need for space around the cancer talk, that is why these boards are so great! So come on, write a novel about your cancer, I for one will read every word.

mommacat4 · December 2014

I agree that cancer is all I think about. I try not to talk too much to my family about it but they all know it's presence and it's seriousness. I don't have an issue with talking about it to my family however, I haven't told any co-workers other than the HR- manager and my direct management team. I am still not back to work yet and between now and January I still have so many appointments that my HR manager said for me just to stay out the rest of the year and call her in January when I find out my chemo schedule and how chemo will effect me.

My next onc appointment is December 31,2014. He wants the port in place by then so chemo can start in January but I don't know what day or how often yet.

I actually think I am more afraid of radiation than chemo but in reality, I don't know how I will react when my hair falls out. I joke about it with my kids all the time but it hasn't happened yet. ..so...we'll see. ...

mommacat4 · December 2014

cherylfg,

The onc ordered the genomic testing on the material removed at the time of my BMX. I have not gotten the results back yet. He might have them though.

I am collecting copies of all proceduress, tests and surgeries and pathology reports every since I was diagnosed. I even went back to my 1st mammogram of the year which came back clear and ok. Obviously it wasn't. My tumor didn't show on any mammogram or ultrasound. But it was clearly there. They found a blurry spot that the die hit and went around when doing the MRI with contrast. If not for that they may not have done a biopsy. After surgery the pathology report said my tumor was 7.5cm.

My uncle is livid about why the doctor's couldn't find the tumor with the normal screening process and how it took them a month to do the surgery after DX. Now he complains about them taking so long to start chemotherapy. I tried to explain to him exactly what is going on but all he sees is his favorite niece has cancer and the doctors aren't moving fast enough. Lol, poor guy, his wife passed away from cancer back in 1989. He is terrifed for me. I tried to explain to him that there have been great new treatments since 1989.

PMR53 · December 2014

Thank you for your post Rosiesride. It brought tears to my eyes as I know we will all get through this but just know we are going through the storm. Cherylfg Thank you for starting this group. I need to get a port, and an EKG and Echo and am currently waiting for results of Pet Scan. Frankly this is probably the worst Christmas of my life. I have 3 daughters and a husband who are scared and worried. I am so glad to have this group of supportive women. Under targeted therapy it only lets you pick one, besides Herceptin, I am getting Perjeta too.

dstar · December 2014

mommacat4-ILC is almost never found with mammograms. Mammos are designed to find ductal cancer. That is why most folks with large tumors have ILC, I too had a mammo where the thickened ridge in my breast was declared benign, just connective tissue. There are threads for those with ILC and with large tumors. My tumor was 14.5 cm. Taken out 18 months after my "good" mammo. So my tumor had 3 to 4 years to grow and spread, based on it's size. I cannot change the past, but when my anger rises about that I think I want to put that energy into changing the info about mammo/ protocols; from my perspective, all women should know 10-15% of breast cancer cannot be detected with a mammo and women with "thickening" in their breast should always be offered a biopsy. When I am healed, I plan to start writing some letters.

RV6gal · December 2014

I think they need to find a better way to screen and find early breast cancer for everyone. I had both a mammogram and diagnostic ultrasound in August this year that could not locate any cancer yet a lump came up in September that was confirmed to be about a 2cm IDC in October when I had a core needle biopsy done. When I saw my surgeon in late October, he said that the cancer had probably been there for about 2 years.

Cherylfg- I'm hoping to hear about the CT scan this week but I'm not sure exactly when.

I too think of cancer all the time but try not to talk about it with friends and family too much. I know they support me completely but only people who are traveling along this path can understand so I greatly appreciate having this resource to sound off, listen and support others as well

Starting Chemo January 2015

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