It's back

Hi Everyone, I went yesterday to my 6 month post chemo check-up and found out what I pretty much already knew that the ovarian cancer is back. I could feel that something was different, so I wasn't surprised until I heard one of the spots in my lower left abdomen was 5 by 5 cm. I do feel scared but I am trying to stay positive. I am relieved that they are going to let me continue teaching. The plan is to have a port put in early next week and next Thursday to start a combination of Avastin and Paclitaxel. I didn't have a port for my previous 27 chemos but my veins are fried. I am nervous about the port. How does it feel to have one in? How have people felt on Avastin? I also want to thank all those who replied to my first post and wished me well. You are all on my mind and I wish everyone a wonderful day.

31 Replies

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  • I don't have a port... I but I heard nurses say it's so much better .. best of luck to ya Mustang93

  • I finished chemo in December of 2013 and still have my port. I forget it's there. My doctor said I could have it removed, but I think of it as my umbrella on sunny day. If I have it, I won't need it. I just get it flushed every ten weeks.

  • Great the port is the best way to get chemo. Mine causes some pain in the tissue around the port but I'm very skinny up there. I just went through first chemo taxol/carboplatin. Port swollen somewhat so ice is my go to. Hope all are doing well. I've got to go find therapy for my depression and anxiety!!!

  • Hi kimmyp, I didn't have a port, but if I recur again I promised both the nurses and my doctor that I would get one. It became very difficult for some of the nurses to find good veins. Even the veins that LOOKED good would often blow out. What is really nice about many of the current ports is that they have ports that you can have the contrast dye for scans added via them, and you can have blood draws taken from them. When I was initially diagnosed, that wasn't the case. Those ports were just starting to come out. I'll try to get some of my friends who have had ports to tell me any tips to pass on to you. But at least in my local support group, they all seem glad they had one.

  • Thanks Gwen, I really appreciate it!

  • I have had by port for almost 3 years and forget it is there most of the time. It still comes in handy for my contrast CAT scans every few months.

    Jeannine

  • I had my port put in this past January. It was a pretty simple out patient procedure. The ports are relatively small (maybe about the size of a quarter) and look like a small bump under the skin. My surgeon used dissolving stitches below the skin so I didn't have to go back to have any taken out. Chemo hook up is easy and you won't have to worry about your veins. I am sure you will notice a big difference using the port. Blessings on your journey!

  • I have had my port over a year. Don't even know I have it most of the time. My first 18 rounds of chemo I had intravenous chemo. 2nd go around had the port in wouldn't have any other way. Good luck sister!

  • I also was on Avastin for my initial diagnosis and also my first recurrence and had no issues either time.

  • Thanks so much!

  • I had Abastin but it made my blood pressure spike. However it does not do that to everyone who takes it. I pray the best for you. I have been through a lot of chemo but be strong and may Gid shine his healing sun on you. Be well.

    Belsie

  • The port should make it easier for both you and the nurses administering the chemo. I have had mine for nearly a year now... Have not had any issues with it... Each time I had chemo I found myself thanking the creator of the port when I saw others arms/hands black and blue from trying to find a vein. Wishing you lots of luck.

  • Thanks so much. Still waiting to have the port scheduled but going ahead with treatment on Thursday. I need to start blasting this stupid cancer as soon as possible!! I am stronger than it!!!!!

  • My port was attached to my right side lower rib. I had stomach wash chemo. Plus IV chemo, no port for that. You should ask about stomach wash chemo. It's uncomfortable cause a lot of fluid goes in your belly. But good outcome. May help. Google it. Best wishes always.

  • Having a port is terrific it makes things so much easier. Ask your doctor for a prescription for a cream that you can put on a hour before and it numbs the area so it doesn't pinch when the needle goes in. It works great you don't feel a thing when you get chemo

  • I'm so sorry it's back and you have to start treatment again. The port is awesome. It's a simple outpatient procedure with almost no discomfort after. You will be very glad you decided to go this route.

    You won't know it is there after a couple of weeks and depending on your size you may not see it. I'm around 125 lbs and you can see a bump in my chest. Clothes cover it though.

    They gave me numbing cream to put on top of the skin 45 minutes before treatment. I don't even feel the poke! Bonus!!! Make sure to ask for some of that.

    I was on Avastin and the only side effects I noticed were achey joints and nose bleeds. Ibuprofen took care of the joints and saline nose spray helped keep my nose moist. I always carry a Kleenex with me. Compared to carbo/taxol it felt like nothing!

    Prayers and hugs!

    Jodi

  • Thanks Jodi,

    I just wish I had longer than 6 months before it came back. I had my first treatment yesterday through an IV. I am scheduled for the port next Wednesday and I will have treatments every Thursday. Thanks so much for sharing with me. How are you doing?

    Prayers and hugs to you too!

    Kim

  • Hi Kim! Always my pleasure when I can share information that might help or comfort! I love this site!

    I am feeling very well and am so thankful for that! I tolerated the Avastin/Doxil amazingly well and avoided all of the horrible side effects that some experience (on Doxil). Unfortunately, my CA125 continues to rise and I have the slight bloating feeling in my tummy. It is another indication the treatment is not working. :(.......On Thursday, after completing 4 1/2 cycles, they are suspending treatment. I will go for a CT Scan next week to see if it shows any change from the one I had in December. From there we will likely start Third line treatment of some sort.

    In the meantime I am back to aggressively researching NK Therapy (Immuno Therapy) in Germany. I have MET 3 people that have had success and the whole process makes sense. My hesitation is I have not talked to anyone with OC. They have all been breast, liver and pancreatic. And....I can't seem to get any information out of the clinic in Germany without first going there for testing. While I understand that to a certain degree, I would be much more comforted knowing the exact process prior to spending big $$$$ traveling there.

    But as I said.....I am feeling really good and running as fast as I can so 'it' can't catch me. :)

    Hugs to you!!

    Jodi

  • Hi Jodi! I am so sorry to hear your treatment is not working. What type of Ovarian Cancer do you have? I have 3c high grade serous carcinoma. I am hoping this works. They are doing Paxitaxol/ Avastin because of the heart issues with Doxol and the 2 heart attacks I had after my first 2 chemos last year. This whole journey has been surreal. I feel like I am doing better than all my family and friends.

    I am so glad I found this site and you to communicate with. I have been trying to leave white sugar and white flour out of my diet and eat more organic. I also am looking into cannabis oil. I have a few people I know who have done well on this but they had metastatic breast and lung cancer. I am such a rule follower but I am beginning to think part of living is being a little freer.

    Keep running and I am routing for you.

    A big hug and positive energy coming your way.

    Kim

  • I have Stage IIIc Clear Cell.

    Two heart attacks??!! Oh my.....as if OC isn't enough to deal with! I hope you tolerate the Taxol/Avastin well. Everyone is different, and I didn't have them together, but with my Zofran (for the taxol) I did well.

    Although I eat low carb, I have not switched to all organic. It seems to be a huge task to accomplish. I've read a lot on juicing and various other 'diets' that are good for cancer patients, but they don't seem to be for me.

    I too am a rule follower. However, I've done a lot of research on cannabis oils that do not contain the THC. Since I've recovered from surgery my pain is just more of a discomfort in my tummy. Nothing I can't tolerate at the moment. If the true pain comes back or the disease progresses.......I'm throwing the rule book out the window and going for comfort. ;)

    Thanks for the hugs......sending some back to you!

  • Hi Jodi,

    Have you had your CT scan yet? You have been in my thoughts a lot. I had my port put in on this past Wednesday and chemo in it on Thursday. I am still pretty sore but I get to take a shower today!!!!!! I hope you are doing alright.

    Hugs and positive energy to you! Kim

  • Hi Kim! So sweet of you to check in! I was just thinking this morning I wanted to reach out to you and see how the port placement went. I imagine it would be tender to get the port put in one day and have it accessed the next for chemo. I had a couple of weeks from placement to treatment. Still no issues with it so I hope you experience the same! I also hope treatment is treating you as well as it can!!

    I did have my CT. Unfortunately, I received news I wasn't praying for. The good news is the ascites that I had struggled with last fall was reduced in comparison to the last CT in November. The not so good news is there is likely progression in my peritoneal cavity and liver (ON my liver not IN my liver). This would indicate the Avastin/Doxil combination isn't working to beat this thing back.............or maybe it is beating it back, but not enough. That is the magic question no one knows the answer to.

    My GynOnc has referred me back to MD Anderson because there is a clinical trial specific to my tumor type that I may qualify for. I have an appointment with them next Friday.

    Depending on what I find at MDA I may hop on a plane to Munich and meet the doctor there to discuss NK Therapy (stem cell therapy) in more detail as it relates to my situation. Until he does the testing there is no information he can give me to help me make my decision of sticking with Standard of Care or choosing his program.

    In the meantime I continue to research other clinical trials in the States that I may qualify for. Most of it is Greek and hard to navigate. I will call the American Cancer Society on Monday and see if they have a division that can help.

    It's all very confusing and frustrating. We'll get it figured out though. I was joking with my husband last night that the only way I'll know if I made the right decision is to look back 20 years from now. :)

    Stay well and thanks again for checking in!!

    Hugs!

    Jodi

  • I have been on Avastin for 14 months and have had no problems with it. I was diagnosed with stage IV ovarian cancer in August of 2015. I have had a port the entire time and I think it is the best way to go. I reoccurred and am presently on Gimzar, Avastin, and Cisplatin. I was previously on Avastin while in remission every 3 weeks. I wish you the best! You can fight this and we are all in this together 💕

  • You will love the port. I have had mine for three years. And two recurrences. It makes the infusions so easy. Wishing you a easy time with chemo. I am on Avastin and Lynparza now.

    Best of luck.

  • Have had my port nine years with no problems. I am on my fourth recurrence so it has been such a relief not to worry about that at least!

  • Hi Joan, so glad to hear from a 9 year survivor and keep fighting on this 4th recurrence... do you mind me asking what stage are you?

  • Original diagnosis was 3 C high grade serous.

  • Didn't even feel my first post, and it simplified treatment enormously. Good luck

  • I had a port in my stomach with my first chemo treatments. No problems. They put numbing cream over the port before treatment.

    I've been very lucky with no major side effects from Avastin.

    Good luck and God bless you.

  • I am so glad I have a port! I don't even feel it anymore. Ask about Tamoxifen as I have read studies that show that it delays recurrence almost 3 times as long as opposed to those who don't take it. I also read about taking half an aspirin a day, which apparently makes it more difficult for the cancer cells to form attachments. This would be after chemo though because it can cause neutropenia. During chemo, avoid antioxidants as these can make chemo less effective. Those are things like green tea and large doses of vitamin C. Best wishes. Research is dashing on and they are finding out more and different ways to treat this disease. Your chances of a positive outcome improve by leaps and bounds!

  • Hi Kimmyp,

    I wish you the best through out your treatment. I have 2 more chemo treatment to go and I will be done. My veins are fried too along with being very small. I hope my veins last for the next 2 chemo. Then I will not have to get the port. I feeling much better now since my surgery a lot stronger. Thanks for all my Teal Sisters Support. We can beat this cancer together and we will Win. Take Care and my God Bless. Only The Strong Will Survive.

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