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Daughter with post transplant lymphoma
Ataloss
1 Posts
Hello, I'm new here. We're in the Ottawa area. My daughter is 13 yrs old and has been diagnosed with a form of PTLD stage 3. Post transplant Lymphoma Disease.

She just completed her scheduled 6 mths of chemo. What now? I am told that getting off of chemo is worse than going through it. Is this true? I know everyone reacts to things differently but I am looking for the things that doctors don't tell you. When you get home afterwards.

Thank you so much!
Ataloss
2 Replies
Whitelilies
2536 Posts

@Ataloss Hello and welcome from ON! So glad you reached out to us. I am sorry, to hear of your daughters' diagnosis and challenges, as she stops, her chemo.

What a fighter she is - getting through 6 months of chemo!

Thank you for trusting us….and your post, will soon have other members chiming in, and sharing their input. (I did not have chemo - but have a few suggestions, below).

I will include a link below NHL (Non Hodgkin Lymphoma), where you can read through, of others' experiences….even post right there, and ask your questions, perhaps other members, have a “young” loved one, facing similar situation/getting off chemo.

Also; please meet @ges54 Also from ONT - Also a caregiver, to a loved one, with NHL -also has info to share, if you wish to join in, to a support group, and connect with others.

@ges54 Kindly, could you share your husbands' experiences, here, (NHL)……and any words of wisdom, to support our new member from ONT @Ataloss whose daughter on a similar path/NHL…..Kindly; share support group info too; hopefully our new member can join in….much appreciation.

Let's Connect & Support in ONT!

Also; reach out to the Canadian Cancer Society; Intake Co ord 1-888-939-3333 They are a wealth of knowledge and resources, to assist you, and your daughter, and your family.

Let us support you both!

(IF you wish to reach out/'tag' a member; just type “@”screen name, no space after @, select name, turns, blue, they receive your message)

Welcome Again

Whitelilies

#caregiving #post transplant lymphoma disease

Trillium
2221 Posts

@Ataloss - were you able to find an answer to your question. My son felt the effects of chemo more so at the end of treatment because the more chemo he had he experienced the accumulative effects. The chemo nurse told us that it would take about 3 weeks for him to start feeling better.

I can only imagine how hard this has been for you both.

Have you found a support group for your daughters age group both for you and her?

How are you managing through all you are going through?

Warm hugs

Trillium

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