Young cousin diagnosed with Non-Hodgekins Lymphoma

So that's two rounds of chemo down. How many more has she got to go? I am shamefully ignorant of these things. However many rounds there are, I'll keep her in my thoughts and route for her. (I'll also keep being frustrated because there seems to be no way to actually help. This whole thing is so unfair!)

my heart goes out. truly. strength and comfort.

Re: Young cousin diagnosed with Non-Hodgekins Lymphoma

Just making sure -- does this info include this booklet (PDF) from the National Cancer Institute? As I said, I'm ignorant about cancer, but on diabetes, I have found that America's National Institutes for Health provide advice that is reasonably specific, helpful, and written in plain English. A first glance at this cancer booklet suggests to me that its style is similar.

But chances are you've already discovered it, I guess.

I know! Just nervous until the tests come back.

Thomas - I am too tired, but will look at your links tomorrow. We have so little cancer in the family that none of us really has any idea of what to expect. We know people in my parents' generation who have had various cancers, but I haven't seen it, really. I think she said she'd hope to be leaving the hospital on monday. I'm not sure what will be happening before then - more chemo, I know.

hugs, LilK

Sleep well, Kris; you deserve some rest.

Littlek,

My thoughts and prayers go out to your family.

No b cells in her spinal fluid! Still waiting on the bone marrow news. She's going home on Monday. She'll need to be semi-quarantined due to a suppressed immune system.

Crossing fingers & toes for her.

I'm glad to hear she'll be going home soon. I'm sure that will be a big relief.

weeeellllll.... home on Monday. Then into Boston on Wednesday. Back to her current hospital on Friday for a CAT scan to see if the tumor is responding to chemo. Then home for the weekend and a full week of chemo the next week. After that she should have three weeks off at home. Today she wrote me an email. She knows that there's a good chance of surviving, but worries she'll be the one who doesn't. And then she apologized for being heavy. Sigh. I should be able to see her on Wednesday.

Tell her that her fears are natural, but that positive thinking is essential to recovery. She needs to know that her attitude will be at least as important as the medical procedures.

(This advice comes from both Hubby and me...and we're both cancer survivors.)

Sigh indeed. Your cousin sounds like a delightful young lady.

No B-cells in her spinal fluid: What exactly does that mean? It sounds like good news, but what exactly is it? Is it (a) that her immune system isn't making the mistake of attacking her own spinal chord? Or is it (b) that there are no degenerated B-cells in her spinal fluid, meaning that the lymphoma hasn't spread to her spinal chord? By what little I know after reading this American Cancer Society brochure, (b) would seem to imply that this test checks if she's having Burkitt lymphoma, an especially fast-growing type. A negative test result would then seem to imply that she doesn't, or at least that it hasn't spread to the spinal cord yet.

Sorry if these are stupid questions; I'm just puzzled, and trying to put the pieces of the puzzle together for myself.

I'm continuing to root for your cousin in my thoughts.

Thomas, I don't know how technical an explanation you are looking for but B-cells in her spinal fluid, or a proliferation of lymphocytes in her bone marrow, would indicate that her cancer has spread beyond the single solid-phase tumor. Note: we all have normal B and T lymphocytes in our bone marrow, but they are healthy lymphocytes in the right ratios to the other cells that are produced there. Spinal fluid is cell-free in a healthy individual.

A normal bone marrow biopsy combined with the negative CSF is the best possible situation in the presence of a single solid-phase tumor and would indicate early stage detection.

littlek, it's natural for her to have periods of sheer terror even when she's generally optimistic about her future. I don't know if you've been told how many lymph groups have been identified as positive, but everything you've heard so far is good news in a bad news scenario.

Thanks, JPB.

Thanks JPB! That is good info (about the cells). I really appreciate you being here for your medical perspective.

Thomas - questions are good!

It's very treatable, as people have said.

Some advice since someone very close to me (who I won't mention specifically as this person is entitled to a little medical privacy) has been dealing with Hodgkin's Lymphoma. Similar though not the same, but some things apply.

Your cousin probably won't just be quarantined this one time, as having a cold or the like can be a lot harder on her than on a healthier person. Plus chemo can be put off if the patient has a cold. Yes, even the common cold. So your cousin may go out wearing a medical mask, or not be able to hug or even shake hands. It's nothing personal.

Nausea sucks, of course, but sometimes it helps to smell something nice but not too strong. Flowery aromas might be too much but the smell of cinnamon might be okay. Small doses are best. My patient liked potpourri. Your mileage will vary in this area. Warn if you're going to send or give such things before you do. Sometimes things that are okay for a while stop being okay later. And then they're okay again.

Foods aren't appetizing but that doesn't mean that nothing is. Italian worked better than Mexican or other types of food. Again, mileage varies. Strong spice of any sort is probably best avoided.

Fatigue is common. Don't overdo or let her overdo, even if she insists. Try not to treat her like an invalid but basically don't get her into situations where there can be a lot of fatigue. E. g. if you go walking on the beach, say, go about 1/2 to 2/3 as far as she thinks she can walk. You can always walk more later. Attitude is important, and she'll feel a lot better if she goes a shorter distance and has success, versus if she attempts to go a longer distance and doesn't have success. Try to be cued in to fatigue as it can come on very suddenly.

Hair loss may or may not happen. My patient liked baseball caps and bandannas, but also had a wig. Perhaps an assortment of colored bandannas would be welcome -- of course, gauge what you think would be welcome. I would sometimes wear a bandanna (like a do-rag) when I saw this person.

Talk about whatever. Chemo and cancer are big parts of her life but they aren't the only things going on in the world, and she might sometimes be a little sick of talking about it all the time. The Red Sox, the weather, the election, your job, your family, etc., there are lots of things to talk about, rather than the elephant in the room.

Good luck to her and to you -- it can be hard to be the support person, too. Send me a PM if you want more info. I've been through this as a support person.

PS Chemo is cycled, then she'll get a CAT scan or PET scan or just a checkup to see how things are going, to determine whether to continue with chemo, ramp it up, ease off on it or change the drugs or add radiation. For my patient the cycle's 4 rounds of chemo. Your mileage will vary.

Jespah, that's great info. Thank you and good luck to your patient (grin).

Such sad news, especially when it concerns someone so young. I'm sorry your family is going through this, k.

If they think she will lose her hair, I suggest she buy a really good wig before it happens. That way, if she feels the need to use it, it will be there. I know someone who went through breast cancer treatment and felt better just having the wig to go out in rather than worry that everyone would stare at her. She once said the wig was the only good part of the whole thing, she got an instant good hair day without any work. Other women just shave their head in advance and make it a statement.

I wish your family the best possible outcome.

Be prepared for chemo brain. The life-saving drugs work by attacking new cells--such as new neurons reaching out in the brain.

It is perfectly normal to be forgetful. I know. I've done it.

Also chemo drugs can lurk in fat cells and when fat cells vanish the residue of chemo drugs has to wend its way out of the patient's system.

More chemo brain. I know. I've been there--and my memory has survived.

I just saw your thread and I want that all A2Kers, like an extended family, should all overcome and commit these events to memory. Good wishes to your little niece. Sounds like you and she are good buds. Im sure she will have up and down emotions and just being there for her does help.

Just the best for her.(and you )