Hello!

[LivestrongSurvivor]

I'm Karen, a four year survivor of stage IV endometrial cancer. I volunteer with Share, Imerman Angels, and the American Cancer Society, because I want to use my experience to help others going through the trials of a cancer diagnosis.

[Nefa-Tari_SHARE Partner]

Welcome Karen, thanks so much for joining.

[Qi-gong]

Thanks Karen for offering to share your experience.

I have recently been diagnosed with stage 4 endometrial cancer and had radical surgery. Started on chemotherapy Carbo/Taxol. Developed delayed severe allergic reaction requiring hospitalisation. The oncologist thought it was the Taxol and omitted it from second chemo course. Rash has recurred though presently not as severe. Am doing daily home exercises as well as 8-9km walks daily. Also on sugar free diet with vegetables, and fish/chicken/eggs, organic and free range as much as possible. Commenced on Metformin and continued Statins. Trying to increase my body’s natural self healing abilities and immune responses to help with my healing.

Trying to access support group for newly diagnosed cancer patients.

I would be most appreciative of your sharing your experience as a live strong survivor.

[LivestrongSurvivor Ambassador in reply to Qi-gong]

Hello! Your story resonates deeply with mine, as I also had a severe reaction to taxol. My oncologist switched me to Doxyrubacin/Carboplatin, and while I continued to experience reactions (rash, flushing, heaviness in limbs, pelvic pressure), they slowed down my infusions situation that it was tolerable. I had three infusions a month apart, a month break, then 25 external radiation treatments, another month break, then 3 more chemos. A month after that my doctor did a robotic hysterectomy/oopherectomy, and that was followed by 3 brachytherapy treatments. I was declared in remission in June 2017 and at this time have had no recurrence. I feel great and am blessed to have had an excellent medical team.

[Qi-gong in reply to LivestrongSurvivor]

Gee that’s a really great outcome and makes all the extremely taxing and exhausting trials and tribulations of the therapy worthwhile. Congratulations to you for your strong spirit and patient endurance.

I have at times wanted to tell the oncologist that my body is rejecting the toxic drugs and to stop the treatment for the time being.

Besides your medical team did you also go on a cancer fighting diet, exercises, massages and seek help from psychologist/psychiatrist for coping skills, mindfulness, positive imagery etc ?

Did you find any books/articles which have been especially helpful?

[LivestrongSurvivor Ambassador in reply to Qi-gong]

Sorry for the delay. I responded to your post but it never posted. Let me try this again! Thanks for your kind words of support. I know the chemo drugs are tough to tolerate, but they do the job. I had lymph node involvement in addition to my tumors and the chemo and radiation left me with no evidence of disease. I didn't follow any special diet, but I did enroll in the Livestrong at the Y program at my local YMCA and would highly recommend it. It's a free twelve-week program including cardio, balance and strength, and support group sessions. As far as books are concerned, I would recommend Love, Medicine, and Miracles by Bernie Siegel, Radical Remission, by Kelly Turner, and if you're a woman of faith, Everything Happens for a Reason (And Other Lies I've Loved) by Kate Bowler. Hope this is helpful!

[Qi-gong in reply to LivestrongSurvivor]

Many thanks Livestrong Survivor, for your reply and sharing of your treatment and management.

Due to the severe reaction I had with Taxol I had it omitted from my second round of chemotherapy. Carboplatin still resulted in rash but much milder and did not need hospitalisation.

As a result of your feedback about your oncologist’s use of doxy I had asked my oncologist about it. She is open to the suggestion although she said it was not their conventional therapy but was willing to give it a go seeing that I am unable to tolerate Taxol. So now I am deciding whether to use single drug or combination with doxy or combination with Avastin.

Appreciate your book recommendations. I have read Radical Remission too (or rather listened to it as an audio book, as that is my preferred way of “reading “) It’s very interesting and I hope that you and I and many others will also achieve radical remission.

[Nefa-Tari_SHARE Partner in reply to Qi-gong]

Greetings Qi-gong! I saw in your post to Karen you mentioned that you are looking for a newly diagnosed cancer support group. I facilitate 2 uterine cancer support groups at SHARE that meet twice a month. Next month we will start a support group for women newly diagnosed with uterine cancer. Currently all of our support groups meet through Zoom, which allows people from all over the globe to attend. Please visit the SHARE website to learn more about the services that we offer.

sharecancersupport.org/uter...

sharecancersupport.org/

[Qi-gong in reply to Nefa-Tari_SHARE]

The so much, Nefa-Tari. I would really like to join in the zoom support group. Will have to check the days:time zone for overseas attendees like myself.

[Nefa-Tari_SHARE Partner in reply to Qi-gong]

Our support groups meet from 6-7:30pm ET. The newly diagnosed will meet from 7-8:30pm ET.

[Qi-gong in reply to Nefa-Tari_SHARE]

Thanks very much, Nefa-Tari

I note that the meeting will be on 5th Oct

As I am in Australia we are 14 hours ahead so it will be 9am for me on 6th Oct

Shall I ring up to get the link to log in ?

[Nefa-Tari_SHARE Partner in reply to Qi-gong]

Please sign up for the uterine cancer support group through either of the links that I sent to you yesterday. Thanks.

[Qi-gong in reply to Nefa-Tari_SHARE]

Hi Nefa-Tari,

Thanks for your reply and advice.

I have signed up for the cancer support group .

It only gives me the option for the 6pm group on 5th Oct

Are the 2 sessions continuous or are they separate sessions ?

Am really looking forward to the meeting the support group !

[Nefa-Tari_SHARE Partner in reply to Qi-gong]

The October 5th uterine cancer support group does start at 6pm ET. Registration for the newly diagnosed uterine cancer support isn't up on the SHARE website as of yet because it is a new group and the start date is not until Tuesday, October 27th 2020 7pm ET. The registration is coming soon, when it is available I will let you know. Thanks Qi-gong!

[Qi-gong in reply to Nefa-Tari_SHARE]

Thanks for the information Nefa-Tare. Should I sit in the present group and listen in or is it better for me to wait for the new group ?

[Nefa-Tari_SHARE Partner in reply to Qi-gong]

Well we have women that are newly diagnosed in the current uterine support group, if you were to participate you wouldn't be the only person in the group that is newly diagnosed. The first newly diagnosed group will be Tuesday, October 27th 2020 but if you feel like you want to participate in a group before then you are welcome to attend the group happening October 5. If you have any questions or concerns related to uterine cancer and being diagnosed please feel free to call our Helpline 844-582-6005. Thanks!

[Hidden]

Hi Karen, I am new here and am not sure what to say or how to contribute. I guess being diagnosed with Stage 3 and poor outcomes predicted, my thoughts were to be positive and supportive without sharing too much as we all seem to have had similar surgeries / chemo /radiation / hair loss and at my first 3 month check up, learned that I am considered a "cancer survivor." I have chemo-induced neuropathy in hands / feet, have seen a neurologist (on meds) advised PT, which I increased from once weekly to twice and whatever this "new normal" is for me, I feel like I have one foot in the grave and the other foot trying to plant in the LandOfHope. This whole experience is surreal and since I have no local support, I thought I would reach out here with NO expectations other than it may be a tool for a more positive mindset. From my reading, it appears there are always those women who are worse off and better off than I feel I am but "normal" I imagine, would be to be rid of these lingering side effects from all treatments. I would like to offer uplifting advice / experiences but having just completed my 2nd three-month checkup, I feel more confused than ever. No one need reply but I am at a loss to negotiate my new "normal." Physical stability and stamina will come in time but 2020 seemed a lost year and I am overwhelmed between meds / nutrition / how much to push during PT and at home / what to read / what to avoid / tools to help diffuse all these conflicting emotions. Karen, I'm sorry I made this about me and not you. I didn't know how to introduce myself. Perhaps I went about this wrong. . . how can I help you? Sincerely, SabrinaLarrabee

[LivestrongSurvivor Ambassador]

Hi Sabrina,Absolutely no apologies needed! I am so glad you reached out as that is what this site is for. Sharing your experience is an important and powerful step in moving forward. I think you are wise to focus on keeping a positive attitude. While we have little control over our treatment and how our body responds, we have complete control over our emotional response to this insidious disease. I will share with you two pieces of advice my oncologist shared with me. First, your stage determines your treatment plan, not your outcome. I’m stage four, just passed my five year mark, and have had no evidence of disease since my treatments ended. Second, we are never promised tomorrow, so live every day to the fullest and don’t worry about the statistics. I hope this is helpful for you and that you will continue to reach out to fellow survivors for support. Please look into organizations like SHARE and their support groups. ❤️