Newbie here

Hello!! I'm new to this site. I've learned a lot from you all. My heart goes out to everyone as this can be a crueling journey.

My journey begins in October, 2016. I started experiencing constipation, and had pains in my abdomen that travelled down my hip and leg. Since I had total hip replacement in March, 2016, I thought it was my hip. Went to Orthopedic Dr and he said X-rays looked fine. Continued to have pain. End of October I discovered a hardened area in pelvic area. I really felt it when I tried sleeeping on my stomach. Fast forward to the Saturday after Thanksgiving, 2016. I had terrible pain in abdomen. So went to ER and they did some tests and discovered a cyst that was 8 cm in size. Most of it was liquid but there was some liquid. He suggested Oncologist to see within a few days. Which I did see Oncologist. She recommended total hysterectomy.

So December 8th, I had a total hysterectomy, with removal of appendix and omentum. He tumor was laying on part of my colon. At first they thought there rumor had attached to colon, but praise God, it had not attached. I was diagnosed with Stage 1c2. Thank God it had not spread.

Oncologist recommended having 6 treatments of Carbo/Taxol, once every 3 wks. My first chemo was on December 20, 2016. I was terrified and very anxious. I had to take Lorazepam to calm down. I also had a port put in as after my hysterectomy, my IV got infected and caused my veins to blow. I was very nervous about port access as well.

The first treatment went ok. When they started the chemo drug, I had a hard time breathing and it felt like my head was going to pop off. So they stopped the chemo and gave me more steroids for a bit. When the restarted the chemo, they went to a smaller drip. It worked. Christmas Day I was ok, which I was so happy about. However, the 26th, was totally different. Very fatigued, light headed and very achy. I also developed a painful stinging sensation down my lower leg to foot when I dangled my legs off the bed from sleeping. It was like while the blood was flowing down to foot, my lower leg and foot was on fire. It lasted for a bit. I was able to walk on it but it was kind of painful. I had a hard time putting my full weight on it when I was working in the kitchen. I also stated having neuropathy on my toes of the other leg. When I mentioned this to Oncologist, they just said let's just wait and see how treatment #2 goes. Treatment #2 brought major bone pain. Nothing helped, not even pain meds. It lasted days 3-5 then I felt ok. In the meantime, I went to podiatrist for the stinging on my ankle and he said it appears to be nerve damage likely from chemo. When I told my Oncologist, they said they would consider changing my chemo. They changed my Taxol to Taxotere and reduced the Carbo. But right before my 3rd treatment, they did the routine blood work. Found out liver counts were elevated and my WBC was 1.5. So we postponed #3 a wk.

Treatment #3-new chemo with reduced Carbo with reduced time in chair by 3 hours. (Went from 6 hrs to 4 hrs). Since I had a low WBC, they decided to have me have the Neulasta patch placed on my stomach. Day 5 I started having trouble breathing, couldn't walk up the stairs in our house without feeling I was going to faint, and pain in my left back area. So on Day 6th I was admitted to hospital being treated for a blood clot. However, the CT scan was inconclusive as there was still blood flowing ever so slightly in the affected area. Plan of attack, 2 shots a day for 6 months of Lovenox. Took about 2 wks to not feel light headed or out of breath. In the meantime, I was recommended to see Hemotologist Oncologist for blood work for liver and for lupus and other such things like blood coagulation. All came back within normal ranges. He recommend changing blood thinner to Coumadin. So we are in the process of changing that now .

Two days before Treatment #4. Liver counts still high. They recommend an ultrasound. So today when I went to Treatment #4, they decided to not give me Taxotere (Docetaxel) but just Carbo. Afterwards, I had an ultrasound done on liver. Turns out everything is fine. Still don't know what the plan is for #5. It might be a reduced level of Taxotere.

So that is my story. Yes, there have been very hard days, days where I wonder if this is all worth it for just preventative measures and feel like stopping everything. But I can still walk, I can still use my hands, and my hair will grow back. I have grown stronger spiritually and mentally through all of this so far. I am a better person for this. It has changed my life.

I don't think about reacurrence at this stage but I'm sure that will change when I am done with all of my treatments. But I'm going to choose not to worry about something that may or may not happen. I just want my life back and to live life.

That's my journey so far. Never thought my journey would be with a lot of bumps in he road. But I have gotten through them with Gods help.

Thanks for reading. I know this was a very long post. God bless you all as you walk through your journeys

8 Replies

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  • Welcome to our group, you found the right place to get help and answers. I also had a 8cm tumor connected to my ovarie. I just had surgery 4 weeks ago, then I start chemo. Well I hope things get better for you, take care😺

  • Hi and welcome. You are having a very difficult ride with this dreadful disease, but it sounds as though your team are on the ball. Stay in touch with this site and you will find the ladies on here will be able to give you loads of support and advice about dealing with chemo side effects.

    Wishing you all the best for your future treatment and hoping they sort it out soon

    Jenny

  • Hi and welcome.

    You're certainly having a difficult time at the moment. It will get better and you will feel brighter. I'm assuming you're in the USA?, I'm based in the U.K. So our procedures are slightly different but our goal is the same one.

    I had a 30cm ovarian cancerous cyst removed from my left ovary and full debulking surgery I too had a pulmonary embolism and had to inject daily to reduce the clot, not fun but necessary, it does work so stick with it, I also had hypercalcaemia (too much calcium in my blood, this was really not nice at all) which was caused by the cancer and its removal sorted the calcium problem. I Had stage 1c3 clear cell carcinomin my left ovary. I took part in a clinical trial which was to try to determine on the best way to administer the chemotherapy. It was the ICON8 trial and has now finished. All of this was in 2014.

    I still have a peripheral neuropathy and always will, it's a real nuisance but, and it is a big but, I feel it's a small price to pay because I would most certainly have died without the surgery and treatment and as humans we do adapt and get on with things.

    You are in a difficult place at the moment, it is so hard while you are on the treadmill that is ovarian cancer and its treatments but it seems that you have a really good medical team behind you , I think that while it is so difficult, the treatment is so very worth it, it gives us another chance albeit on a bumpy journey, all of us who have taken this route are with you, we are there for you and you are welcome to our lovely circle of friends. You can ask us anything, you can tell us anything and there will be somebody here who will be able to give you the advice you need or just put your mind at rest because they've been there. Good luck with the rest of your treatment and fingers crossed for positive results.

    Sending you big hugs of encouragement and lots of love ❤️ xx Jane

  • your story was not long, heart wrenching, yes, but you've had a rough journey, and you're still here, a survivor. i started chemo oct 2014, stage 3 serous ovarian. had 2 rounds of chemo, seem to tolerate chemo. but side effects are debiltating like sore joints, muscles, constipation, and muscles loss. i look at each day like a gift, and am thankful for what i have and try to enjoy every minute of this precious life.

    about neuropathy, i've found exercise, hot and cold showers help to get the circulation going.

  • I had a large tumor that laid against my colon and caused a kink. Had to have colon resection during debuking surgery. So thankful I didn't have to have a bag. I kept telling my oncologist I needed a colonoscopy. He finally relented. I got where I had severe constipation. I was taking enough meds for constipation that would've put an elephant down.

  • Sorry you joined our group, but there is comfort in knowing we are not a lone. I too just found this group for 3 yrs I felt a lone. My mass was 10 cm x 8 cm x 16 cm, a 2 lb mass. It was attached to my colon, engulfed my appendix and female organs. I have had two major surgeries hysterectomy, appendix, scraped the colon, removed 15 lymph nodes, I had cancer in two. Had surgery to put a small port in stomach to begin stomach wash chemo at city of Hope, Duarte CA. I did 18 rounds of chemo,8 stomach wash chemo in 14 weeks. A year later had stomach pain and it was determined I had 5 hernias, they were repaired with pig stuff in case I needed surgery again it would be easier for my Dr to go in. My favorite hospital was Desert Reg medical center in Palm Springs. My Dr is Amy Hakim she's a excellent surgeon. She's at Desert oncology surgical center. I saw her yesterday, I've had fluid being drained every 3 months, trying to get that stopped the mass puts pressure on my bladder. If it doesn't get better soon I will have surgery this summer to fix it. We are doing complete scans again to ensure my cancer hasn't returned somewhere else. My CA 125 was a 6. But as you know there's always something. Keep in good spirits and stay positive, I'm stage 3c clear cell ovarian cancer. My type is rare. I haven't met anyone else with this type. My doc went extremely aggressive with me, I still see her every 3 months. I won't let her extend it. I figure my life depends on us catching everything fast now. You've had a tough go, and hopefully once you feel good everything will be much better for you. Take care and God bless.

  • Thank you everyone for your responses. It means so much to know that I am not alone. I pray everyone's journey goes as smoothly as it can. Thank you for sharing your stories.

    Has anyone tried sewing chemo hats? I have some square scarves I use but they are kinda small. Thinking of making some with longer ties. The oncology center has a big box of crochet hats but. I scarves. Thought I would add some scarves.

    Have a blessed day!!

  • I love your attitude to keep up the good fight. I'm fighting the battle too. Had 6 round of chemo had my surgery on 2-16-17 which was very intense will go through 3-4 rounds of chemo treatment starting March 31 of this month. We have to go through so much. That why its a fighting battle. We have to fight like hell. Thank God I have my Faith. Don't know were I would be with out it. It keeps me Strong. God has my back when nobody doesn't No matter how things come bad or negative, I know God is in control of all things and what he says Goes. I wish you the best through out this journey that we share. Take Care and remember Only The Strong Will Survive.

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