Dose dense treatment

[foxgem]

Hi all, I’m home from my first oncology meeting and things are feeling very real now!

My cancer ER+ HER2- stage 3 and fiesty, onco score of 32. I’ve had 2 lumpectomys. Still waiting on the results of the last one but they are expecting it to have clear margins.

My treatment plan will be 4x EC every 2 weeks and then 4x paclitaxel every 2 weeks. Looking to start in about 3 weeks time. I have decided to have the PICC line. Then I have radiotherapy and hormone therapy.

It sounds like they are throwing everything at it which I’m both terrified about and greatful for!

I will attempt the cold cap and plan on getting a pixie cut soon. Very nervous about how that will look.

Hoping to hear from others that have had the same treatment plan? Naturally I am really worried about side effects and how managable it will be. Mostly I’m worried about how poorly I will seem to my 2 teenage girls. Id really like to get through this without scaring them too much

Tips and positivity appreciated but also don’t be afraid to get real with me haha. I’d like to be as prepared as possible

[maria_joy]

Hi,

I had the same dense dose treatment of AC which is every 2 weeks 4 cycles. Taxol once weekly ( 12 cycles)

The AC is hard on your body. That’s the one treatment that makes you feel awful.

But I managed it very well.

I work as oncology nurse. Sad to say after 15 yrs of working as a nurse I am a patient. I used that knowledge to prepare myself for my treatment. Did a lot of research and modified my diet and did management of sx.

You see- the chemo is hard on your body. Destroys your normal cells and cancer cells. It gets complicated because it brings down your immune systems. Your immune system plays a huge role in your health.

Chemo suppress your immunity. To counteract getting sick or developing infections. Boost your immunity by eating healthy foods that is immune boosting. Exercise is important. They call it now a days oncology rehab program. Aim for 150 to 350 min of exercise per week. Moderate to high. Depends on your baseline. If you used to be a very active person then this one is achievable.

My tips would be as follows:

1. Symptom diary - it would help you monitor your health and response to your body.

   ex. Cycle 1 - Ac

   water intake -monitor( important to have 2 to 3 liters) the more you drink the more excrete the byproducts of chemotherapy.

   bowels- very important. Chemo can either give you diarrhea or constipation.

   Feeling sick- I would suggest food that is easy to digest. Porridge, soup ( vegetables - Cruciferous ) very good for immunity. Remember you need to nourish your good cells after chemo.

   eat small meals / more frequent

   research good food, nutritious and easy to prepare.

Deep breathing/ walks / connecting with nature, journal , counselling will help with positivity.

Exercise is very important- it’s my no. 1 Weapon to manage side effects. The physiology of exercise - it boost your immune system. You sweat and your skin is the largest excretory organ. The more you move post chemo, drug will not stay in your system longer. Exercise promotes good circulation - oxygen delivery to your normal cells is good which is important.

Pace your exercise - bad days 15 min walk in the morning, mid day 15 min and afternoon 15 min. Good days you can do more.

That’s why having a symptom diary is important so you monitor your response to the drug. If you are coping well.

It will be challenging- but you can do this!

If you have teenage girls - It’s normal for a mother to worry. But I always shift a negative thought to something positive.

Just have an open communication with them. You’d be surprised they are stronger than you think and they can be your exercise partner and motivator.

“I often say, chemo is detox! I need a new cell to replace the bad cell.”

Exercise will hep you. Read about it because there’s a lot of study that shows the importance of exercise as part of your chemo journey.

I’ve imparted this tips to my patient and I have few who are very proactive with their rx - they suffered less side effects!

Good luck!

All will be well.

You would be surprised how our body heals itself.

Yoga Pilates meditation walking strength training.

xxx

[herts82]

Hi @foxgem I’m having the same treatment plan as you. Currently done my second EC cycle last Wednesday. I had a wide local excision to remove a lump and DCIS in my left breast in early December and started EC in late Jan. After the first cycle I didn’t take any of the recommended meds and tiredness, nausea and constipation were my main symptoms. After about day 5 I felt my energy levels were up and I could go a whole day without needing a nap, and did start walking daily (20 mins) and doing normal household chores. For me it was really important to maintain some kind of routine so I didn’t lie in bed all day or sit on the sofa all the time, which is easy to do. I have two young children so has been a motivation to be present with them when they are at home and maintain a normal routine for them.

After my second EC I took the anti sickness meds straight away and constipation meds and I have done a lot better after the second cycle, still the tiredness for about 3 days but as I wasn’t nauseous I was definitely eating better. Fluids also really important, I couldn’t stand dairy but water, ginger tea, squash I’ve managed well. The hardest thing this cycle has been the hair loss. Mine started around day 16, so 2 days after my second cycle. Each day more and more hair is coming out when I brush it, I haven’t washed it yet but am petrified how much will come out when I do. I’m not at the stage yet of needing to shave it off but it has definitely thinned quite a lot (I have cold capped).

I like the recommendation of exercise from @maria_joy, I don’t think I’m doing enough and can feel my body is tired when I try to do more cardio or strength training, so on my good days I’m going to attempt to build a workout into my daily routine.

It is a very emotional journey and I’ve had quite a few days of just being teary, it all happens so fast that there isn’t a lot of time to process it all. But crying it out has also been important and allowed me to accept some of these things that are happening to me completely outside of my control.

I hardest bit is the unknown of how you feel after you start, but take each day as it comes x

[maria_joy]

@herts82 yeah hair loss was a big thing for me as well. I started mine after C2 of AC treatment. I didn’t do scalp cooling. So I completely lost my hair. I cried too because before cancer I have a very long nice hair. Since I know I will loose it, I cut it short so it’s easier for me that way. Building acceptance is important. What helped for me was - I always look at myself in the mirror and say. I’m pretty and I look good despite being bald. I would check celebrities who are bald and carry it well and still managed to pull it off.

Wear different types of wig. But eventually I gave it up because it’s too uncomfortable for me , since I love going for walks and exercise and I would sweat.

Yes exercise is important. It makes you feel good and it helps with the mood swings.

Remember girls beauty comes from with in. If you feel good , you feel you can do anything.

Yes @herts82 - have an exercise routine.

Resistance band is good. Build strength.

With chemo you would loose your muscle mass.

With chemo - you will have mood swings.

Exercise stabilise your mood.

They say you gain weight with chemo because of steroids. I didn’t, maybe because I was active. No chemo belly too.

It’s different for everybody. But do what works for you and do what makes you feel good.

Xoxo

[foxgem]

Thank you @maria_joy and @herts82 for your messages. That’s all very encouraging.

@maria_joy I’m sorry you went through this whilst knowing all the details. That must have been hard? Most of us get by sometimes with a little bit of ignorance to whats coming haha. I will try to think of the chemo as a detox, I can see how that could work. After my mum had chemo she looked brand new. Her skin was amazing, she brightened up and her hair was lovely and new. Here’s hoping I get the same end of chemo glow. How are you doing now?

Ive just finished reading the book Moving Through Cancer by Dr Kathryn Schmitz and she is so confident about exercise before and during treatment. Her biggest advice is even on bad day, if you can intentionally move your body for 10 minutes do it. If after 10 minutes you feel awful then stop, if after 10 minutes you feel ok then carry on. Everyday aiming for atleast 20-30 minute’s.
It is definitely on my list to try. I already do yoga and walking so I hope to keep this up, even a little bit.
Hydrating enough will probably be difficult for me because I’m very forgetful with it but I am hoping once I start treatment my focus will be so high on feeling better that I’ll remember thats a key part of it.
Ive also read that eating enough protein is really important so as well as eating whole foods, vegetables, fruit, nuts I might buy some protein shakes.

Sorry you are going through this right now @herts82 how are you managing day to day so far? Is it just the few days after you feel it most? I am definitely the sort of person that needs routine and I know that will help my family also.

My friend has arranged for her hairdresser to come and cut my hair for me at home. I know I will be an absolute mess. I’m not a very confident person, I don’t really get on with my face haha so my hair helps me feel better about myself. Without it I’m extremely worried how others will see me especially my husband. He’s very reassuring that all he wants is me better but I think it will be difficult. I hope after this I learn to love myself a little bit more and I would like to feel less attached to my hair. I cut it from waist length to a bob cut before my surgery which I hope will help it feel less of a jump to short short.

Thank you for your replies

[rubytuesday]

You are doing all the right things already! I have exactly the same chemo regime as you, have had 2 x EC so far. I cold capped and am shedding but it’s not too bad yet - if it gets worse then it gets worse and I have a wig and hats ready. I cut it short too and dont particularly like it but know it was for the best and if I have too shave it then thats what I will do. Probably with lots of tears.

I walk every day with the dog, and have done a few runs now I am recovered from surgery - am going to start doing some weight training in the house too, just to try and keep my strength. And like others have said drinking lots of water and eating well - plus eating treats just because it’s all a bit rubbish and sometimes you just need crisps! My 12 yo is coping ok with it, she has had a few blips and had a virus last week which was a nightmare as I had to stay away from her, but shes been more helpful that previously and seems to understand its temporary - I have given her tasks like research on next years holidays, and clearing out out clothes so she feels like she is helping but isnt getting in the way!

[foxgem]

@rubytuesday you are the same 2 week schedule? I went into the meeting ready to ask for every 2 weeks so I am happy and then they added the extra 2 doses on top and it did panic me a little. Now I look back, what was I thinking expecting x6 every 2 weeks. My brain and it’s ability to think it knows best!

It’s really good to hear you are getting through ok. I definitely feel this would be my best dog era. I can imagine how helpful that is to have someone to walk with. Unfortunately my fat lazy cat won’t help movement wise haha but he will offer me some comfort bless him.

Have you invested in any compresion gloves or socks to help with the nerve problems? I would like to help reduce the risks of neuropathy and I can not cope with cold on my head and my hands and feet. Maybe I’m over thinking things again.

I haven’t enjoyed a guilt free bag of crisps or chocolate since october but I am going to give myself some grace through treatment

[foxgem]

Oh and I love the idea of giving my girls things to plan. Thank you for that idea. They are coping very well right now but I know that might change as treatment goes on. My husband built me a poly tunnel yesterday so I can grow some vegetables in the garden I might get them to grow something they want although they are more and more like teenagers each day so it might not work

[foxgem]

Just wondering if you all had a PICC line? Doing some research on it now, it goes in a lot further than I thought!

[maria_joy]

@foxgem - I know right! When I was diagnosed I thought I’m going to die. I’ve seen a lot of pain, suffering , loneliness and death in my 15 yrs as oncology nurse.

But it’s a very rewarding experience.

I learned to embrace it. Acceptance is a process. But it’s a very humbling experience because I think I’ve become a better nurse. Learned to empathise in a deeper level. Gave support and encouragement to my patients.

I love my work, returned to work after everything but my transition failed. I am not a super woman as I used to be. I thought I can rebuild a better me. But my body has gone through so much. I have to be gentle with myself. I don’t think I can do clinical anymore. I’m thinking to go back to school and do something less stressful for health reasons.

You will be okay- you can pull this off.

Trust the process and just be ready.

Equipped yourself with knowledge so you are more prepared for this battle. Right ammunition is needed to win this!

Xoxo

[sharync]

Hi @foxgem @maria_joy I am on dose dense too 4xEC and 4xPax fortnightly. I had 2 cycles on time but my 3rd was delayed by 2 weeks due to low neutrophils. I was pretty worried about missing the schedule as I am on dose dense for a reason. I felt well and hadn’t had any illnesses so my team were surprised. I did have lower baseline neutrophils (which team are putting down to having cancer and the mastectomy) before treatment began so that didn’t help. Anyway yesterday was EC 3 reduced dose by 20% and increased G-CSF injections to help stick to fortnightly schedule. My oncologist was really helpful and I do feel ok about the dose reduction now as really want to complete treatment. Any tips for boosting neutrophils? I walk a lot and do Pilates and have been doing a few strength workouts at home. I have a good diet etc and quit all alcohol on diagnosis. I have worked in between cycles and look after my grandson a day a week - he is the best medicine! Anyway I hope you get on fine with EC - I just feel sick for a few days then pick up usually. The injections are a pain - my husband does them as I can’t and I do them at night to reduce bone pain. I take a painkiller too.

Sxx

[maria_joy]

Hi @sharync ,

Different people respond to chemo.

In my case, my neutrophils were never low until my 16th cycle of chemo - taxol. My regimen was ACT - 4 cycles of AC and 12 cycles of Taxol.

Neutrophils plays a huge role in your immunity. They are soldiers in our body. So the reason often chemo will be delayed with low neuts ; it’s too risky to give another round of chemo because you will be prone to neutropenic sepsis - which is any form of infection that your body cannot protect because of low neuts ( no enough soldiers to fight any form of infection)

That’s why GCSF is given with EC / AC .

In my experience - I boost my immunity with exercise and food.

I pick my foods - eat foods ( Cruciferous vegetable and immunity boosting food). Whole foods is recommended, don’t take supplements because oncologist don’t recommend it.

Chemo works on oxidation , it’s not safe to take supplements that works on oxidation. We won’t get the benefit of chemo if we counter it with supplements that works as anti oxidant.

But food is safe. But I know some foods need to be avoided like grapefruit.

@sharync the dose reduction is probably a good option for you. Enough dose of the drug that your body can handle.

Continue doing your yoga/ Pilates and strength training. Some days are good - do more, bad days do less. Do breath work and connect with nature.

xoxo!

[maria_joy]

@foxgem i had a port. It works for me because with picc. I have to go to the unit for weekly dressings and port is easy to hide. Just check with your nurse the pros and cons of having a port - a- cath vs PICC line.

@rubytuesday yes you are right! ! We deserve a treat. When I’m good on days - I’ll eat chocolate ( my weakness) hahahhah

We can’t eliminate everything but we can limit.

Xoxo

[Nat1984]

Hi @foxgem I had a similar treatment to you for the same type and stage of cancer almost 3 years ago (I was 39 at the time). I managed to keep working (from home) and was well most of the days. My small kids didn’t really notice what was going on. EC definitely harder. Cold capping worked for me. I had my hair cut into a bob before chemo and I kept at least 50% of my hair (without obvious bald spots) so I definitely recommend. I’m on exemestane and abemacicllib now. You can do this! xx

[foxgem]

That’s great to hear thank you Ive spent lots of effort the last few months getting my immune system strong and so I’m hoping my body will recover well. Obviously I can’t know for sure till I’m there

I thought about the weekly dressings @maria_joy and I liked the idea of having to get myself up and to an appointment. Although how I feel about this at the time I don’t know haha

[maria_joy]

You will be fine, if that suits you weekly dressing that should be okay. The nice thing about picc line it doesn’t leave a scar after. When my port was removed- I have an ugly scar. @foxgem

[foxgem]

Our scars helped give us our life back

[herts82]

@foxgem I also had a port fitted and have found it good, it’s notoriously difficult to get blood from my veins so this has been a lot better for me.

@Nat1984 so glad to hear the cold capping worked for you, I’ve been shedding hair like crazy these past 5 days and feel like I have about 30% left at the moment (I have also cold capped by 2 EC treatment cycles).

[herts82]

This is such a lovely idea and what a lovely gesture from your husband. Mine got me some earrings to distract from my balding head

[lottie4]

Hi @foxgem sorry you’re going through this. It’s so scary and daunting when you hear the word chemo. I was really hoping to avoid it so when they said I needed it I cried on and off for a few days and then decided I needed to sort it out and deal with it, haha. Getting advice is great and there are so many women to connect with on FB or instagram if you use those platforms, and of course advice here.

I had 4 x EC and 4 x Paclitaxel this time last year. The EC wasn’t too bad for me. I would feel icky around 4 hours after having it. The first time I had it I felt icky all night and most of the next day and it got less each time. Do take the anti sickness meds even if you don’t feel sick, this will keep it at bay. I got some crackers to have with them when I didn’t feel like eating. Also had ginger tea, ginger ale and ginger and lemon kombucha on stand by!! Steroids may keep you up, just go with it, get a good series on the go! Make sure they give you constipation meds as that’s a very real thing!! You will most likely have to do daily injections with EC to increase your white blood cells, but it’s not as scary as it sounds - I had never injected before and was ok.

Paclitaxel is longer, you dont have to do the injections (or i didnt) and the icky feels go which is great. I ended up with really bad itching through paclitaxel which was horrible but I don’t think that’s a common thing. There are other side effects but generally people find EC harder I think.

100% agree that movement helps, I got out for a walk most days and it really helped and did a bit of running. Eating well when you can too helps but sometimes it will just be beige food in those EC icky days.

With regards to the cold cap, I did this. The first session was horrible though I put a swim cap over it as I had heard it may help but it was too tight and I felt horrible. It slowly got easier but I did lose a lot of hair. I kept mine at shoulder length and I was able to tie it up and use a wide headband to disguise the patches. I only wore a wig once, rocked lots of baseball caps!! A month after treatment i shaved it off as it just looked really silly but i know a lot of women who have had great success with it.

I hope some of this helps, sorry its so long. Everyone is different so your side effects could be very different from mine. I did a daily video going through chemo, just to let everyone know how i was doing and talk about my side effects. If you’re on insta it may help - laugh_a_lottie . Wish you well on this journey, there will be hard crappy days but there will be so many better days than you think there will be and we are so much stronger than we think we are… Big hug x