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Newly Diagnosed and Starting Chemo

Newly Diagnosed and Starting Chemo

Posted by JustJan on Jul 10, 2019 6:37 am

My story is a bit unique. I went for a screening mammogram in January and at that time a suspicious 1.3 cm lump was found.  A week later more testing including a biopsy were performed.  I was diagnosed with cancer.  I had a lumpectomy and node involement and margins were clear. I was diagnosed with stage 1 triple negative invasive ductal carcinoma, grade 3.  At my post op visit said they were sending me to Medical Oncologist to discuss chemo and then radiation would follow.  At the appointment, chemo offered as a prrvention and I felt risks outweighed the potential reward so declined.  As part of that appointment they sent me for a CT scan. A mass was identified on my ovary and within a few days I had an appointment with the genetics clinic and with the gyne oncologist and three weeks later (after I finished radiation) I had a total hysterectomy. Found out Monday I have stage 1 serous high grade ovarian cancer and I am BRCA 1 positive.   So after all that I starting chemo on Monday.  I will be having 6 rounds 3 weeks apart of Carboplatin and Taxol.  I am looking for advice on what to take with me on day of chemo and then anything that helped you deal with the side effects.  Do I need someone with me at home for the days following chemo? I know I am one of the very lucky people who were diagnosed early and strangely am grateful for the breast cancer.  So far I have tolerated my surgeries and radiation very well so hoping I will cope with chemo well too. 

Re: Newly Diagnosed and Starting Chemo

Posted by Kims1961 on Jul 10, 2019 9:50 am

JustJan‍   I just have to say that is such an awesome photo with your username!

WOW!  That is a whirlwind of news for you to take in. You are so right - your breast cancer strangely was a good thing.  You definitely have the right positive attitude although I know we can still have those days that are less than positive.

In 2017 I was diagnosed with breast cancer - the surgeon told me - it was caught early - small 2 cm tumour so all I needed with a lumpectomy and back to work I go!  Ha ha...diagnosed with invasive ductal carcinoma , they couldn't get clear margins - so off to chemo and radiation I went.

When I started this journey, I said I was fine with bilateral mastectomy as long as I didn't have to do chemo. I had no real info. about chemo other than all of the " Bad" stuff - side effects, damage etc etc.  I found it hard to see chemo as a "good" thing.  When it was explained that in order to be "curative", I needed chemo and the reasons why, I consented.  I had 6 round of the cocktail of FEC/D.

My husband came with me for each appt. as we live over 3 hours from our cancer centre.  During chemo, I brought my iPad, a book and water to drink.  The hospital has wifi so I could do some emails, facebook etc. Wear comfortable clothes, bring some of your favourite snacks - although they often have wonderful volunteers who come around and see if you want a drink or cookies. I also brought a special quilt to snuggle in and if you're cold - ask for their amazing HEATED blankets.  Even in the summer, it can be cold in the chemo units with the air conditioning.

In regards to side effects, I could make it home - 3.5 hours before they started to hit me.  The cancer unit gave me anti-nausea meds to take so that got me home.  I found it took a day or more for them to settle in.  Mostly if was extreme fatigue and my tastes for food and liquids was off. You will find there will be foods you can eat  - it's a little of trial and error.  It may be worth having someone home with you the first few days - just to be sure, you are doing ok.  For me, the fatigue hit and I slept for the first couple of days.  I wasn't good company but it was nice that there was someone around in case I was really ill. For me the first week was a lot of fatigue and nausea. The second week, I was start feeling more like myself and by week three I was almost "normal" - then the cycle starts again.

https://www.cancer.ca/~/media/cancer.ca/CW/publications/Chemo%20and%20other%20drug%20therapies/32055-1-NO.pdf
Some people have little side effects. This publication can really help:  

Be sure to ask who to call if you have any questions when you get home.  I could call my cancer centre - Mon - to Fri. during the work days and speak to a nurse.  They should go over all of the things to watch for before you leave chemo.  The other "good" thing about chemo is that my treatment took a number of hours, so I could ask questions of the nurses - who are awesome at understanding some of our concerns, questions et.

The fact that you have tolerated your surgery and radiation very well is a great indicator that you will do well with chemo too.  

Feel free to message me or ask other questions.  We are with you in spirit on Monday!

Kim

Re: Newly Diagnosed and Starting Chemo

Posted by Elsie13 on Jul 11, 2019 5:36 pm

Hi again, JustJan‍ .  I had the same chemo drugs as you.  I see you got some great ideas from Kims1961‍ . So yes, the best thing is to take your husband/boyfriend or any close friend or relative to chemo with you. My treatments were in winter, and the room was cold.  But sometimes the drugs make you feel hot. So I was wearing  long pants and a long sleeved shirt, and I had a big cardigan to put around my shoulders.  (You have the IV in your arm, so you can't put on or take off things in the usual way. )   I took a couple of my favourite herbal tea bags.  The volunteers had regular tea, but I wanted something fruit flavoured. I had terrible restless legs sometimes, due to the steroids they gave me just before chemo. So I wanted to buy a pilates ball, which is a very soft ball about 8" in diameter. But instead, I bought a child's play ball at WalMart. So I put the ball between my legs and squeezed, to keep my muscles occupied.  Must have looked funny!  Anyway, I had restless legs before ever having chemo, so you might not have this problem.
    If you're likely to be alone at home, maybe have some friends phone you at set times (when you think you won't be napping?)   Or have a short list of good friends, and phone one of them before your nap, and ask them to phone you in 2 hours , or something!
   Let us know how it goes!
 

Re: Newly Diagnosed and Starting Chemo

Posted by JustJan on Jul 12, 2019 7:56 pm

Thank you for your suggestions.  I want to get going with it but am scared at the same time. 

Re: Newly Diagnosed and Starting Chemo

Posted by JustJan on Jul 15, 2019 8:52 pm

Had first chemo today and went fairly well. I had a severe reaction of chest pain and excruciating back pain very early into the infusion of the Taxol. Stopped the infusion amd administered IV Benadryl and hydrocortisone as well as oral lorazepam. Also ordered ECG. When symptoms subsided and after 45 minutes they restarted and I completed my first treatment. I am feeling pretty good at the moment - no nausea but am tired. Hoping it doesn't get much worse over the next few days.  One down 5 to go!

Re: Newly Diagnosed and Starting Chemo

Posted by Brighty on Jul 15, 2019 9:03 pm

JustJan‍  thanks for keeping us updated! Keep it up !!! Glad you are feeling good !

Re: Newly Diagnosed and Starting Chemo

Posted by JustJan on Jul 27, 2019 6:19 am

Good morning.  Well I seem to have tolerated the chemo very well.  I had no nausea to speak of and my taste buds remain relatively intact.  The one side effect I did have was severe nerve pain from the waist down.  Once the doctor sent me some meds it cleared right up.  Not going to lie, that wasn’t fun.  By the one week mark I felt like hadn’t even had chemo, except maybe slightly more tired than normal. I meet with my oncologist on Monday and hope to mitigate the leg pain going forward.  If not, at least I know we can manage with meds. 

Re: Newly Diagnosed and Starting Chemo

Posted by Elsie13 on Jul 28, 2019 1:55 pm

Good to hear from you JustJan‍ .  Did you have the ECG?  I didn't have the nerve pain you describe, but I had neuropathy in my feet.  That only happened after chemo #6 - you know the tingling and pain in the feet. As for the tiredness, I found it got slightly worse with each chemo. Your second chemo will be in about a week? 

Re: Newly Diagnosed and Starting Chemo

Posted by JustJan on Jul 28, 2019 5:39 pm

Yes they gave me an ECG.  Next chemo is August 6th.  Blood work and checkin with my doctor tomorrow.

Re: Newly Diagnosed and Starting Chemo

Posted by Sandy L on Jul 29, 2019 12:45 am

Hi JustJan‍ 
It sounds like everything is going well for you. I was diagnosed over 20 years ago with Stage 4 Ovarian cancer.  My Ca 125 way back then was 9,800 and I had massive pulmonary embolisms, then later a DVT even though I was on a steady course of Coumadin.  The good thing is that I tolerated chemo very well, helped with Zofran, the medication for nausea. I had 3 chemo's first, followed by surgery, then 6 more chemo's. At the end of treatment my ca 125 was 15.2 and I was pronounced, 'disease free'.  I had no more chemo after that, nor Coumadin.  I've been so very lucky to have remained in remission right to today.  

Your attitude sounds really good so I'm certain you'll be able to conquer the disease in whatever way you are meant to.  I have used a Zapper (as per Dr Hulda Clark) from the beginning and still do use it daily.  I also follow the Johanna Budwig diet (albeit loosely) having eliminated all the bad fats and sugar and generally use only coconut oil (for light cooking) and Flaxseed oil as part of my Budwig breakfast. I walk 4 miles every day because it makes me feel better and because sunshine is important to the protocol.  I was diagnosed at the age of 53 and here I am at 73, still alive and happy with my lovely husband, who has been a blessing to me right from the beginning. 

I hope you don't mind explain all this to you, I can remember being at the place you are right now, where folks were not dishing out much hope for me, and there was a quiet expectancy that I wouldn't make it.  I was darned determined to prove them wrong.

Take good care of yourself and add whatever you feel you need to the stuff you're already doing (chemo etc).  Keep your eyes and ears open.  Bye' for now, Sandy.

Re: Newly Diagnosed and Starting Chemo

Posted by JustJan on Aug 29, 2019 6:16 pm

Round 3 done! Halfway through chemo! Doctor reduced my Taxol to 70% strength to try to help with the leg pain and with neuropathy that started after round 2.  I'm happy to say that my leg pain was significantly reduced and am able to manage with Advil and Tylenol at least so far. I am happy to not need the narcotics at the moment. I also wore the cold slippers and gloves this time and most of the numbness has disappeared.  I am hoping this strategy will hold over my last 3 treatments.  Other wise I am feeling pretty good, eating and drinking well.   Glad my doctor listened and came up with a plan. It is so important to have an open dialogue with how you are feeling so they can help you navigate this journey.

Re: Newly Diagnosed and Starting Chemo

Posted by Aries on Aug 29, 2019 8:56 pm

JustJan‍ - That's great news - glad you are doing well!! 

Sandy L‍ - I just read your post - 20 years in remission from stage 4 ovarian cancer! Wow ... thank you for posting! I draw inspiration from people like you who share their survivor stories ... I have stage 4 Rectal cancer and while I am still in early stages of treatment I truly believe I will get through this. Stories like yours give me hope that I will be able to reach that goal too.

Re: Newly Diagnosed and Starting Chemo

Posted by Sandy L on Aug 30, 2019 8:42 am

Hi Aries‍ 

I'm so happy my story gave you HOPE, because when I was first diagnosed, I looked for folks who had made it and after I did, I believed I would make it too. Keep optimistic all the time and keep your eyes open for things you can do for yourself to help your situation. The answers are out there!