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@GloHo the Benadryl kicked my butt too! I would become pretty sleepy after my pre-chemo infusion, but I’m far too hyper to fall asleep, lol. Turkey is IN, onions and celery are being sautéed. Potatoes are next! The skin is so lovely this time of the year that I never peel them. Trying to sort out Halloween decor. Blasting bluegrass through the house to keep me going! Nothing like the sounds of a banjo to keep my feet moving! 🤣🎃👻🍁🦃

Hi @BennieTBear …great news on the surgery outcome and I give you high marks for what appears to be some good energy, just a week post surgery. Gets lots of rest during your recovery. I will look to other Teal Sisters to comment on chemo soon after surgery. Mine was 6 weeks post surgery.

You are allowed to feel sorry for yourself…that's totally normal, allowed (choose your adjective or verb) however, lean in as much as you need to all those support groups, including this forum. It's a good place for comfort and support. I'm 3 months post my last chemo and 3 months into the Lynparza maintenance drug however I still have the occasional bout of "why me" with a few tears. It's being human.

Remind me as well, do you have a good support group surrounding you?

Stay strong. You are doing great!!!

@BennieTBear welcome, I had 3 rounds of chemo, surgery early June 2020 then 3 more rounds right after surgery. I completed the last 3 rounds by July 23 2020.

It was okay, no worse than the first 3 and it was oddly comforting knowing the surgeon had removed all active cells and the chemo was doing cleanup.

@BennieTBear welcome to the club nobody wants to join. This group has been immensely helpful to me when I was first diagnosed in June 2023. I had my surgery July 2023 and started chemo 6 days later. I had 6 rounds of carbon and taxol every 3 weeks. I reacted horribly my first infusion and then to a lesser degree the 2nd and 3rd time. When people ask me I tell them that chemo didn't kick my butt!

My biggest side effect was fatigue fatigue and fatigue. I just wanted to watch tv all day long and I spent much time doing so. My other 2 side effects were constipation and joint pain.

Best of luck to you in your final 3 rounds

Hi @BennieTBear and welcome to our support group. I began receiving chemo (carboplatin/paclitaxel) and immunotherapy (Bevacizumab) just under a month post-surgery. I had 6 rounds of chemotherapy/immunotherapy every 3 weeks, and then 11x immunotherapy only every 3 weeks…a total of 11 months of IV infusions (August 2023-July 2024). Like the other ladies have stated, it was fatigue and joint pain that knocked me down a bit. I oftentimes experienced some abdominal bloating which was relieved with a heating pad. For me, Restoralax worked well to keep my bowels going. I kept a daily journal of side effects and also took my BP several times a day. Sometimes my bladder was a bit annoyed after chemo, so I wore pads to bed because of leaks on my way to the toilet in the middle of the night. Coming into winter, perhaps you may want to invest in a heated blanket? I love mine, and spent a lot of time resting on top of it during the day when I went through chemo. Thinking of you and sending hugs! 🤗

@Tanja I was wondering that myself too. I thought it was another class of medications not immunotherapy. I've never had it, but I remember mid way through chemo I mentioned it to one of the residents on my team and his words to me were ' Bevacizumab s no joke" whatever that meant. Never brought it up again until my oncologist mentioned it to me at the end of chemo. She said she could give it to me as maintenance but would rather " wait and see"

I do a lot of waiting it seems lol. I've read quite a bit on how the data shows it works in ovarian cancer. Now I'm wondering if I should have done the maintenance . I'm stuck between the two schools of thought, a: give everything upfront and hope for the best, and b: save treatments for down the line if needed.

Sigh.

Wow! I had NO IDEA that Beva wasn’t immunotherapy…IDK why I was given to understand that’s what it was? 😳 As for the harmless part, I found that my joints really ached and I needed to take Restoralax for a few days after receiving it. I am Stage 2B HGSC, currently NED. Just feeling generally tired and weak these days. Just have no stamina whatsoever. 😑 Anyhow…I corrected my earlier response about the Beva.

@itzwhatever glad that your CA 125 has dropped! Yes, the hair loss is a nuisance. I used to apply a wee bit of massage oil or coconut oil on my scalp. How are you feeling overall?

@itzwhatever so happy to hear your cancer markers have improved!

@itzwhatever my hair also went quickly. I never had to shave it as it pretty much came out in chunks in the course of a few weeks. I moisturized my head every day. It seemed to help reduce and eliminate itch. My eyelashes disappeared by chemo 4 and finally my brows by chemo 5. I painted on brows for a few months. I was shocked at how fast they’ve grown back (they are pretty much fully returned less than 3 months post my last chemo).
Congratulations on the CA 125 drop. Every win is a cause for celebration.

@Sandi6

I’m glad to hear you got things moving! I’ve just been through this myself with two trips to ER. I’ve been fine taking 15 ml of lactulose for the first 2-3 days after chemo until the final round.
A couple of FYI’s.
- Cancer BC publishes their constipation protocol online. It’s very helpful.
- ER did an enema, but my team said they would prefer oncology patients be managed top down. The risk of infection is too great when chemo has knocked out your white blood cells. So no enemas or suppositories.

Those F’n CA markers! My CA 125 rose after surgery then fell back to normal levels after the first or second round. CA 15-3 fell initially but plateaued rounds 4-6 and remains above normal. The only research paper I have found suggests that this marker (normally associated with breast cancer) can be elevated in more advanced ovarian cancer. It is associated with poorer outcome, but that is not surprising since more advanced disease typically has poorer outcome. When I asked about it, the Dr said “well at least it’s not going up”.

Waiting on my CT report and hoping for good news.

@GloHo its good to know just how far you can go with senokot. I tend to err on the side of caution when it comes to OTC meds and in this situation it was the wrong way to go. I also learned that this is no time to add fibre to your diet, in fact a low residue diet is recommended. Fibre can cause painful gas. And don’t stop taking the restorlax the day after you have a successful BM. A few more days allows the gut to return to normal.

@GloHo I just read your clinical trial story…. Very impressive and what strength to make it through all the up and downs. This gave me courage. I forgot under which subsection I read it, so I wanted to text here ( the site with all the sub topics is a bit confusing). I checked for clinical trials at PMH and Buffalo, US and learned pretty fast that it is difficult to get into these trials - eligibility, trials are ended, or- US - too expensive. It is also very encouraging that you are still alive and functioning. I am always worried that if drugs don't work, the end is in near sight.

I am in 2nd Carbo and paclitacel + Beva cycle for OCCC (Tp53 positive) recurrence and equally already look for clinical trials as I am expecting becoming platin-resistant any moment. I had a good talk with my MedOnc at PMH. Similarly to an earlier comment by someone, I remain shocked by my experience so far that tumor genetics and testing is done on a need-to-know basis.

So, when I had the discussion about newest and best trials for my clear cell tumor, I learned the following that I want to share: It appears that immune therapy works best for those with MMRd - mismatch repair deficiency. And I read somewhere that this is because these tumor cells look more foreign to our immune system. Since, I am proficient, meaning I don't have MMRd, immune therapy is not a good option for me. My hope that immune therapy could rescue me in the future was immediately destroyed- but then who knows what will be developed in the future. It appears the antibody -drug- conjugates - ADC are the new kid on the bloc. These drugs consist of an antibody that targets a specific protein that is over expressed in your tumor. This antibody is linked to a strong cell toxin which is released when the antibody docks onto the protein. Since the tumor has more of it, the idea is that the tumor gets more toxic drugs than the rest of your body. On such famous drug is Mirvetuximab directed agains folate alpha receptors.

In respect to my tumor, she mentioned to test it for HER2- human epidermal growth factor receptor 2- which can be expressed in all solid tumors , also in ovarian cancer. As per literature, it is associated with poor prognosis. Apparently there is now a ADC against HER2 which is trastuzumab deruxtecan. After the discussion, I thought why wasn't this tested earlier. It is not a mircacle drug but can stabilize disease and prolong progression free survival. The more I think about it, we should all be tested for all therapy and prognosis - relevant markers, right at the beginning and then treatment should be immediately tailored to this. I guess, the problem is that we don't have miracle drugs.

Good day ladies. It has been confirmed that after 4 years of being NED my cancer has reared its ugly head again. Confirmed by PETscan. In office meeting with my gyne oncologist Nov 7th then starting chemo again Nov 12th for another 6 rounds pausing after 3 to see if surgery is required. To say I am scared and sad would be an understatement. I have had so many negative reactions to medications since the original treatment that I am afraid I will react adversely to the carbon platin treatment this time. Does anyone have any advice or experience with reactions 2nd time around?

@NovaScotiagirl Sorry to hear your news. i am sending positive energy, healing stamina and loving vibes of fortitude and strength. It must be very scary facing the possibility of similar reactions to chemo & associated medicines. You’ve got this, as you are likely far more knowledgeable and better prepared than the first time around. When you are feeling overwhelmed, remember to breathe … in … and breathe out.