Barb's Avatar

Barb

New Haven, CT

  • Patient: Ovarian and Fallopian Tube Cancer
    Patient Info: Newly diagnosed (has not begun treatment), Diagnosed: 8 months ago, Female, Age: 65
  • Barb's Avatar  

    Experience about 1 month ago

    Barb

    Drug or Chemo Therapy: I've had three rounds of etoposide/Cisplatin. Had an allergic reaction to Cisplatin. Also, kidneys not in great shape, so doc discontinued the Cisplatin (rough on kidneys) and started Carboplatin. Much better, absolutely no side effects after first infusion. Two or three rounds to go. Really looking forward to summer!

  • SarahPants' Avatar  

    Wall Post about 1 month ago

    SarahPants wrote on Barb's wall

    Barb! I miss you! Hope you're well. Hugs!

    • Barb's Avatar

      Comment about 1 month ago

      Barb

      Hey, Sarah...I'm doing great. Had a few setbacks but I'm on track now. I hope all is well. I know you've had another surgery. How is it going? Let me know. Think of you often.
      Barb

    • SarahPants' Avatar

      Comment about 1 month ago

      SarahPants

      Oh no! I'm sorry. Are you ok? I'm glad to hear that you're doing better now. Yes, I had my second surgery a few weeks ago. I'm still home mostly relaxing on the couch (the Dr. doesn't want me to drive or do much). I'm feeling pretty well, which is really fantastic. How is everything else going for you? Is your husband doing well. I think of you often as well :o) Hugs and love!

  • Barb's Avatar  

    Wall Post 3 months ago

    Barb wrote on SarahPants' wall

    I was just reading a book called "The Survivor's Handbook: Eating Right For Cancer Survival" One of two books given to me by a friend. According to this book you should jump right in to a vegetarian diet, no halfway measures. They recommend following a vegetarian diet for three weeks and then make a decision. They claim that your taste buds have no memory of what things taste like after three weeks. The book also contains recipes. Some sound really good to me. Now I have to involve my husband in this. He's meat and potato guy and doesn't like Indian, Chinese, Thai, or Malaysian. He surprised me the other day and tried tofu! So, if I'm going to make this food he needs to eat it or make his own meals! It would be nicer if we were both in it together! I already have a juicer that I need to dust off and start using that along with changing my diet. Believe me, we both could afford to lose some pounds. I also know that sherbet is allowed on a vegetarian diet. But first I'm going to eat all the junk I love before getting serious.

    Went to the acupuncturist yesterday and really won't know how effective the treatment is until after the end of this treatment cycle. I am curious myself. Like you, I didn't know that egg freezing was in the trial stage. I though they had been doing it for years. Go figure. What kind of show were you scheduled to be in? How disappointed you must be to have to pull out. I love NYC, and once my stamina returns I'm going to plan a visit. I too have a lot of free time and not much motivation. I really got to turn this around soon, I'm getting sick of myself. Just one last question, how is your husband coping with everything? That's it! I love hearing from you. Take good care. Lots of love.

    • SarahPants' Avatar

      Comment 2 months ago

      SarahPants

      Hi Barb!!!

      How's it going!!? I hope you're doing well! The weather here is gorgeous!!!! How's it over in CT? Yay, sunshine!!!!

      This vegetarian thing seems to be working well for me! How is it for you? I still crave meat every once in a while, but I lost 5 lbs this week just from changing my diet!!! Awesome!! (Maybe I'll be able to fit back into 90% of my clothes- haha!) Jonnie's a total meat and potatoes guy as well. Like your husband, he won't eat anything that isn't American comfort food or Italian staples- haha! Every once in a while, I'll get him to eat a little chicken from a Thai place. I would be the happiest woman in the world if he, one day, decided that we would go to eat Indian food for dinner! It's funny because our fridge looks like it's been split in half! My side has organic and homemade things with tons of veggies and his side is all processed meats and other nasty things- haha! We now have to shop at two separate grocery stores!!! (It's still worth it, though- and I'm working on pulling him over to the dark side!)

      Now that it's been a few days, have you seen or felt any results from seeing the acupuncturist? I hope that it helps! Have you tried any other "non-conventional" medicinal things?

      I was supposed to be doing the show Eileen with the Light Opera of New York. I was so excited. Now, knowing that they definitely don't have any space opening up in the OR, I wish that I had gone anyway. Then again, I'm so tired and blah feeling, I probably wouldn't have done "my best work." Ha! I know what you mean about the motivation- I feel EXACTLY the same way, and I too am quite sick of myself! I am feeling a little motivation to paint my nails teal (teehee)!

      Jonnie's doing surprisingly well with everything. He doesn't flinch. It's almost weird to me, because he hasn't really reacted at all. He only talks about it if I bring it up (which has been a lot lately (eep)). It's kind of nice to have someone so steady when I have the occasional freak out moment. I am still going through some feelings of regret and guilt about not being able to have "our" child. But Jonnie's been absolutely wonderful and soothing through everything. I know for certain now that he's a "keeper." How is your husband doing with everything?

      Sending love and hugs your way!!!!!

  • pamholtzman's Avatar  

    Wall Post 3 months ago

    pamholtzman wrote on Barb's wall

    Hi Barb: I have started chemo. I'm in my second set of three before surgery. I wasn't surprised by the diagnosis because cancer is pretty rampant in my family. What I was surprised about was the calm, although I had a hard time telling my adult children. They lost their father a year ago. I always hate giving them more "stuff" to deal with. "Guilt"

    You are right. Connecticut is not so far away. When we're both up to it maybe we can meet. In the meantime, feel free to vent or whatever works for you. I'm delighted to be here for you.

  • pamholtzman's Avatar  

    Wall Post 3 months ago

    pamholtzman wrote on Barb's wall

    Can I offer my friendship? Although I live far away(NJ) I am walking your walk and we're close to the same age (I'm 63.) Hopefully the commonality will allow us to share easily. Sometimes new friends can help.

    • Barb's Avatar

      Comment 3 months ago

      Barb

      Oh, how happy I am to accept your friendship, and New Jersey is not that far away! I once drove from Hartford to Princeton in 2hrs and 59 mins, but I have to admit I was flying low. I see that you haven't started your treatment yet. What are the treatment plans? How are you with this diagnosis...freaked out I'm sure. Please let me know what's up. New friends can always help, and I know that I can use as many as I can get. Thanks for reaching out to me. I look forward to sharing this journey with you.

  • SarahPants' Avatar  

    Wall Post 3 months ago

    SarahPants wrote on Barb's wall

    Hi Barb!

    How are you? I've had trouble writing on your wall :( It keeps giving me the little "loading" lines and not posting. Hopefully it will work this time???
    Anyhooo- Just checking in to see how everything is going? That stuff with the PA sounds somewhat comically ridiculous and definitely Frustrating! That's crapy about the recurrence rate. EEp. I guess that all a person could do would be to stay positive. At least it gets better after a while- just hold out for the long stretch :o)

    The money aspect is hurting us too. Man... and insurance co.'s stink. At the moment I've been trying to research benefit coverage for IVF and egg freezing. It's way to complicated.

    Honestly, I've had a rough week. I'm crazy tired and just feeling crappy. I have to have surgery again in the coming weeks. So far they have me booked for April 2 because the Dr. only operates on Mondays and Tuesdays, he's going on vacation, and the OR is "booked solid." So apparently I'm "on call" for coming in if they have a cancelation or find extra space. I'm just tired of being stressed out and not having a plan or real schedule. Ok- there's my rant- haha.

    Anyway- sending my hugs your way. I'm sure that we could all use a couple thousand. :o)

    • Barb's Avatar

      Comment 3 months ago

      Barb

      Sarah..so glad to see this post as I was beginning to worry about you! I know that IVF is extremely expensive. Plus the cost of whatever insurance doesn't cover and copays.....ridiculous. It really sucks that you don't have a plan in place. I'm really surprised how cancer patients are handled by the health care professionals at times. I go for chemo on Monday when they will hospitalize me to infuse the meds very slowly as I had an allergic reaction to the Cisplatin. I will go in Monday morning if they have a bed available. I will be discharged Tuesday afternoon. Then I will continue the last three days of my treatment as an outpatient. That will bring me to the halfway mark of my chemo. I'm going to an acupuncturist to help me with the side effects that have hit me a day or two after finishing therapy. I'm curious to see how effective it is. I'm also making plans to make extreme changes in my diet (I am a major junk food junkie)...so this will be hard but interesting. Other than that, all is well. I don't feel or look sick (just that I'm bald, but with my hats no one seems to notice). I hope all goes well for you....keep me posted on your progress
      Love,
      Barb

    • SarahPants' Avatar

      Comment 3 months ago

      SarahPants

      Hi!

      Yes- the diet thing!! I know, I've not been the best about eating "right" either. Jonnie and I got an ice cream maker for the wedding, so now it's out favorite thing to design and eat new and interesting flavors (in-fact we're eating "breakfast ice cream" at the moment) Hahaaa! I've been looking into eating a more plant based diet (thinking about going vegan, though I love steak and would have to give up my ice cream- waa). Have you looked into the "Crazy, sexy, cancer" books? Apparently there's a whole franchise around them. The writer advocates juicing, vegan or vegetarianism, and other dietary doodas. So- now I'm thinking about getting a juicer (ha)(I believe they sell ones that can make ice cream-like healthy things- yippee). My Dr's don't think that dietary changes would really help- but it couldn't hurt, and I think more holistic approaches are just as viable. Let me know how it goes with the acupuncturist goes! I've always been curious about and the treatment. I've had friends swear by them for helping with TMJ issues, and my voice teacher has wanted me to see one for years to alleviate my allergy symptoms.

      Wow- you're chemo regiment sounds tedious! Big hugs to you! That's crapy about the Cisplatin and having to go into the hospital. Yuck. Hospital smell freaks me out ever since the first surgery, but I think I'm getting used to it (not sure if it's a good thing). It's good that you look good! Do you have a large hat collection :) I'm sure in winter (now that it's actually cold- ha) having them all the time is handy as well as stylish ;)
      Yay- halfway through!! That's excellent!! Are you going to do anything to celebrate?

      As far as the IVF thing- it's actually giving me a headache. Apparently in MA it's mandated to be covered by insurance Co.'s. However, my husband's company just got bought by another whose policy is based out of TN. Iww. So- at the moment, it looks like we're not covered. Yuck. I'm looking to see if, because our circumstance isn't the norm, it might be covered by some loop-hole. Fingers crossed. Also- apparently egg freezing is still a "trial" thing- wtf? I totally thought that it was another "normal" viable option. Blorg.

      Man- this one is long- haha! I have tons of free time now. I was supposed to go to NYC yesterday for the next three weeks to be in a show- but now that all of this stuff has gone down, I pulled out and have nothing do do here at home. Haha! I did hear about a "Chocolate brunch" at a fancy hotel down town. Maybe I'll take one of my girl friends and feast. Ha! (So long for the vegan trial).

      Ok. I've written a ton. Hugs and best wishes and love for the weekend and your hospital stay. Also- I figured out my computer problems (a setting issue) with this sight- yay!

      XXX
      Sarah

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    New Follow 3 months ago

    Barb

    is following StephMooneyham

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    Wall Post 3 months ago

    SarahPants wrote on Barb's wall

    Barb!! Hi!! I just found this site (maybe you know about it already) called www.inspire.com

    It has a whole section devoted to OvCa and lots of people with updates and sharing links specific to OvCa. I've learned so much from reading peoples posted informative links. Just thought you might be interested.

    How are things going? Sending hugs your way!
    P.S. I'm sure that your brain is still beautiful (in reference to your worry about chemo brain :o) )

    • Barb's Avatar

      Comment 3 months ago

      Barb

      Hi...thanks for the site, I really like it. Frustrated today because I went to the MD to find out other treatment options. All he did was talk to me and tell me he would investigate it and have his physicians assistant call me this afternoon with the results. Then the physicians assistant listened to my lungs and pressed on my belly! Wtf? I will ask her the reason for this visit when she calls me this afternoon, I've already racked up bills since this started and I don't need another Dr. bill and have my time wasted as well. I also found out that the type of cancer I have has a 66% recurrence rate in the first year. At five years that drops to 6.6. That was very disheartening to me. There, now I've vented! How is everything going with you? I think of you every day and hope that it all goes extremely well. Thanks again!

  • Barb's Avatar  

    Wall Post 4 months ago

    Barb wrote on mcc's wall

    Hi, I'm a 64 yo who has had surgery and just started chemo. So far not too bad. I just wanted to let you know that I am out here, sharing a similar situation and wish you well!

    • pamholtzman's Avatar

      Comment 4 months ago

      pamholtzman

      Hi, I'm 63 and have just been diagnosed and started chemo. I wish you and all of us well. Together we'll get through.

  • SarahPants' Avatar  

    Wall Post 4 months ago

    SarahPants wrote on Barb's wall

    Hey! How are you feeling and how are your treatments going? Hoping you're doing well.

    • Barb's Avatar

      Comment 4 months ago

      Barb

      Hi...just had my second day of chemo. I go as an outpatient for five days. I am getting hydration (because of the cisplatin's effects on the kidneys) and along with the cisplatin, I am receiving VP16. So far, everything is going well. After I finish this round, I do the same thing all over again in Feb. I understand that the chemo may not work the same way each time, and that I could even be experiencing side effects after Chemo ends. I don't look into those things because I don't want anything to play on my imagination (I would probably have every side effect on the list if I knew what they were. Day two and I'm convinced I already have "chemo brain".} Anyway, I'm just striving to take things as they come which is true to my nature anyway, and try to find humor everywhere! Hope everything is going well for you!

  • Barb's Avatar  

    Wall Post 5 months ago

    Barb wrote on softballmom's wall

    Hi, I just wanted to say hello and introduce myself because I live in New Haven and will start chemo next week. I had my surgery in November (hysterectomy). I will be getting chemo five days a week then off for 28 days. I am not looking forward to it. Are you getting any support from the hospital? Are they giving you the right pain meds? I wish there was more I could say to help you, but see if the hospital has complementary services and take advantage of all they have to offer. Best of luck.

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    Wall Post 5 months ago

    sweetcfo wrote on Barb's wall

    Hi Barb. I just wanted to follow up with you on the chemo. I went into the hospital on Dec. 13th for the Taxol and Cisplatin chemo treatments. The hospital had to order the chemo offsite so it took them way too long to get started. The taxol went in through an IV and it was rough. I've asked them to install a mediport so I don't have to worry about all these IVs. The taxol itself didn't make me nauseated. They gave me decadron (steroid), benedryl and it all seemed to go fine. The only issue was after getting the taxol for 24 hours, they had to shut that IV down and get another one because my veins had taken enough. The Cisplatin was through the IP and it was strange. I told everyone it felt sloshy in my stomach. It takes about 2 days to get that out of your system once they administer it. Then I went in 2 more times for hydration. Yesterday, they gave me more taxol through the IP so once again I feel sloshy from the chemo. I had to turn every 15 minutes for 2 hours to make sure all the insides were coated with the taxol and also when they administered the cisplatin. I figured out I needed to exercise after the hospital stay. I was in bed on the 4th day. I just didn't feel like getting out of bed plus I had issues my bowels. But on Sunday, I got myself up and went for a walk. I didn't feel like it but it did help. The next day, my appetite was much better and my energy levels were up. Just my thoughts on my first experience. Hope this helps. Good luck.

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    Wall Post 5 months ago

    sweetcfo wrote on Barb's wall

    Hi Barb. I actually start chemo a week from today. I am excited to get started because the sooner I start, the sooner I can finish it. LOL I will let you know when I go through my first treatment. Do you know what chemo drugs they will be using? My dr. is using Taxol and Cisplatin. The Taxol will be completed through an IV. They will be admitting me to the hospital for overnight treatment. Then the Cisplatin will be done via intraperatoneal (IP) treatment. This will be administered the second day after the Taxol is completed. Finally, I will have to go back in a week later for another IP treatment of Taxol. They are planning on providing me with fluids during that week as well. Has your dr. discussed this with you yet? Good luck.

  • Barb's Avatar  

    Wall Post 5 months ago

    Barb wrote on sweetcfo's wall

    Hi, had my surgery three wks ago today. Will start chemo rounds after Christmas. How are you doing with the chemo?

  • Barb's Avatar  

    Wall Post 6 months ago

    Barb wrote on SarahPants' wall

    Stringing cranberries sounds great, very nostalgic. I think I might try that too. My husband is digging up his childhood train set to run around our tree. Very exciting. Today we go to doc's to find out the type of chemo. Oh, Sarahpants, I'll be so glad when this is all behind me.

    • SarahPants' Avatar

      Comment 5 months ago

      SarahPants

      Hi Barb!
      Sorry I haven't written in a while. Things got crazy around here for the holidays and I've been trying to take care of my husband who just had rotator cuff surgery. Yuck! How are you doing? I just read that you started chemo. I hope that you're doing ok. I also hope that you had a lovely Christmas! Also- may your new year be filled with possibilities and happiness! How did the train set work out?

    • Barb's Avatar

      Comment 5 months ago

      Barb

      So good to hear from you again! Had a great Christmas, but husband's trains had a glitch, so he'll be working on them for next year. I won't start chemo until Jan.9th. I had my port inserted on Dec. 27th. I definitely worried about the chemo, but I gotta do what I gotta do! Next year at this time it will all be behind me! Hope your husband has a quick recovery, and that your New Year is great!

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    New Follow 6 months ago

    Barb

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    Wall Post 6 months ago

    SarahPants wrote on Barb's wall

    Hey Barb- how did your appt go?

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      Comment 6 months ago

      Barb

      Sarah, turns out I have stoma stage IIc ovarian cancer. Doc says I will need chemo, and it will most likely be the"old fashioned nasty kind" (his words), but he was going to check with colleagues to see if there have been any new developments. I will know the kind of chemo at my appt Dec. 5. In the meantime, I feel terrific. How are you doing?

    • SarahPants' Avatar

      Comment 6 months ago

      SarahPants

      Hi! Sorry to hear that you will be needing chemo... that's pretty gross. I'm glad that you're feeling well! Where are you going for treatment? Are you going to send your path reports out for a second view? How are you doing emotionally?
      I'm doing ok- still really tired, but functional :o) Getting ready for Christmas! It'll be our first married Christmas over here- so we're very excited. I'm about to start stringing some cranberry garland. (I have no idea what I'm doing, but at least there are online tutorials)

  • Barb's Avatar  

    Wall Post 6 months ago

    Barb wrote on SarahPants' wall

    I am sooo happy for you. This is the greatest news ever. I'll be going for my first post op appt today....finding out the results....nervewracking.

    • SarahPants' Avatar

      Comment 6 months ago

      SarahPants

      Thank you!! I'm sooo happy and relieved! How are you feeling after your surgery? I'll be sending warm wishes your way. I think the day before and up to that post opp appt. was one of the worst! Has your Dr. not told you anything? At least after your meeting you'll have a plan. I've heard that fear is best met with knowledge. Big hugs!

  • Barb's Avatar  

    Experience 6 months ago

    Barb

    Procedure or Surgery

  • Barb's Avatar  

    Question 6 months ago

    Barb posted a questionOvarian and Fallo...

    I am 64 yo with newly diagnosed ovarian ca 8 days post op. Sudden onset of extreme persperation, then chills

    • CarolLHRN's Avatar

      Answered Question 6 months ago

      CarolLHRN answered

      I agree with Kelly. I would think it's more related to an infection than hormones. Definitely call the doctor and take your temperature.

    • PetraW's Avatar

      Answered Question 6 months ago

      PetraW answered

      I agree with everybody. I had serious infections after my mastectomy 5 weeks after surgery and it also came with fever and chills. It is very important to go and have it checked out. If you have an infection you need antibiotics. It will take the antibiotics about 4 days to work. It was very scary to see the infection get worse before it finally got better. However, because the antibiotics were not completely killing all the bacteria, I had two more infections and finally during the last episode, the antibiotics were changed and it finally cleared it up completely.

    • Cindy's Avatar

      Answered Question 6 months ago

      Cindy answered

      I recommend that you take your temperature to see if you have a fever and talk with your doctor. I did have problems with chills and hot flashes after my radical hysterectomy for ovarian cancer without having a fever or being sick. My last period was about 6 months prior to my surgery.