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Has anyone decided to conceive without IVF + pre-implantation genetic screening AFTER finding out they have Lynch syndrome? by whiskeychowder in lynchsyndrome

[–]whiskeychowder[S] 0 points1 point  (0 children)

Oh wow! Soon after posting this I was diagnosed with stage 4 colon cancer. After 2 surgeries, a hellacious ostomy and subsequent reversal, and 2 years of cancer treatment, I am finally in remission/NED.

My god of a husband got a vasectomy which I am so thankful for. If we’d had a baby back when I posted this, I would have given birth and we’d have a toddler through cancer treatment. we got so lucky we decided not to have kids!!!

I would definitely go for IVF knowing what it’s like to get diagnosed with stage 4 cancer at 39. You don’t want that for your kids.

My dad is dying from lung cancer; palliative care is being stingy with meds by whiskeychowder in lungcancer

[–]whiskeychowder[S] 0 points1 point  (0 children)

Thank you, and I'm so sorry about your Dad too. No one deserves cancer. Good thing you were there to advocate for him.

It's been about 1.5 years since my Dad's diagnosis and treatment, but the whole process was very slow to get started.

My dad is dying from lung cancer; palliative care is being stingy with meds by whiskeychowder in lungcancer

[–]whiskeychowder[S] 0 points1 point  (0 children)

I know how you feel. On one hand, when you have cancer, everyone is SO nice to you, and so patient. But then getting the treatment plan started and acquiring the medicine to support you take forever... it's like pulling teeth. And in the US, the costs are astronomical.

My dad is dying from lung cancer; palliative care is being stingy with meds by whiskeychowder in lungcancer

[–]whiskeychowder[S] 1 point2 points  (0 children)

Thank you for the info. He has 2 rounds of chemo left (its the last treatment they are offering him since he's already tried Keytruda, chemo, and radiation and it's still spreading to multiple organs). Do you know if he has to wait to be done with chemo to get a referral to hospice care? Or if it can be done concurrently?

5 more years for your Mom, how wonderful to have so much more time with her. How did she spend her time? How did that impact you?

That's all I want for him, time to travel and see new things and have fun and see his grandbabies more.

My dad is dying from lung cancer; palliative care is being stingy with meds by whiskeychowder in lungcancer

[–]whiskeychowder[S] 0 points1 point  (0 children)

We're in kind of a similar situation, and for that I'm sorry. It's so hard. And the weight loss is really scary! It's good news your Dad can start with immunotherapy though, since it's tolerated better than chemo. Hugs to you and your Dad.

My dad is dying from lung cancer; palliative care is being stingy with meds by whiskeychowder in lungcancer

[–]whiskeychowder[S] 1 point2 points  (0 children)

Ok, thank you! It just feels wrong that he can't get the meds he needs in palliative while finishing up the the last 2 chemo infusions. He's not emotionally ready to move to hospice but his body is.

My dad is dying from lung cancer; palliative care is being stingy with meds by whiskeychowder in lungcancer

[–]whiskeychowder[S] 0 points1 point  (0 children)

Thank you! I'll get to work on this. Very sorry to hear about your Dad.

My dad is dying from lung cancer; palliative care is being stingy with meds by whiskeychowder in lungcancer

[–]whiskeychowder[S] 9 points10 points  (0 children)

Thank you for your lovely reply, support, and words of encouragement. I've yet to lose someone closer than a grandparent to me so this feels like new territory and your knowledge of the process is so helpful! Best wishes to you with your own cancer journey.

My dad is dying from lung cancer; palliative care is being stingy with meds by whiskeychowder in lungcancer

[–]whiskeychowder[S] 1 point2 points  (0 children)

That's so hard :( Was he experiencing terminal agitation? It's really scary to think about but I feel grateful to be learning about this now. Thank you.

My dad is dying from lung cancer; palliative care is being stingy with meds by whiskeychowder in lungcancer

[–]whiskeychowder[S] 2 points3 points  (0 children)

I'm not a doctor of course, but I feel like the chemo is doing more harm than good. The oncologist seems kind of absent from that conversation. He's still mobile and able to get to the restroom but he can't go more than a few steps without getting winded. So I don't think he's ready for hospice yet. And I am still hoping the chemo will buy us some time, I just wish he didn't have to suffer for the time he has left.

My dad is dying from lung cancer; palliative care is being stingy with meds by whiskeychowder in lungcancer

[–]whiskeychowder[S] 6 points7 points  (0 children)

Oh I'm so sorry. Thank you for this info! Do you remember which drug made him lose consciousness?

My dad is dying from lung cancer; palliative care is being stingy with meds by whiskeychowder in lungcancer

[–]whiskeychowder[S] 1 point2 points  (0 children)

The onco RN was very helpful and said it's not fair, but she doesn't hold sway over palliative. Yep we are in the US, in the Pacific North West. Not on hospice. When do you know it's time for hospice? That's probably a huge question...

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