New Here - Mom's First Time on Chemo - up to two months

[bohojack]

I'm new here, so I'll introduce myself and tell our family's story before I ask my question I suppose.

My name is Jackie, I'm 20 years old and still living with my parents, and my brother. I found out I was pregnant in May, so right now I am about 7 months in, and living in the basement suite of my parents house. This has been a struggle, and knowing that my mom has a first grandson on the way - my first child, my brother doesn't have any children - has made it that much scarier. I need my mom now more than ever, and it's been difficult, and strange, to be 20, pregnant, and taking care of my mom who is bedridden.

My mom was diagnosed with lung cancer at the beginning of last month, after being tentatively diagnosed with lupus. She has a paraneo plastic syndrome which affects her legs, causing lots of swelling and pain - this keeps her in bed most days, along with general fatigue. This is why they thought it was lupus at first, but it is a side effect of the cancer, and as such is untreatable until something has been done about the tumor.

Initially, the doctors had her on prednisone (started at about 20mg and moved up to 50mg when it wasn't working, weaned off quickly when cancer found) and methotrexate as they were thinking they were fighting lupus, not cancer. She stopped both medications and is currently not taking anything other than tylenol to combat pain, and atavan to keep her nerves calm.

The cancer is said to be large cell carcinoma at about 5x4cm, if not a little larger, and it's located so close to the bronchial tube that operating would require removing the whole lung. This can't be done as of yet, as she has a few affected lymph nodes in the area.

So for right now, they are going to start chemo and radiation, and do that for about 4 weeks, and do another scan to see if surgery can be done.

I have two questions/problems... the first is: what can we expect with my mom's first round of chemo? she's a strong woman but she's been off her feet for months now and is weakened already from the syndrome. I know the radiation will likely cause her some weight loss and pain in her throat, and that the chemo will most likely make her nauseous and cause hair loss.. is there anything else anyone can tell me to expect? How to be prepared?

Also, I'm wondering if this seems like the right course of action for the time being, as I know a lot of those here have more experience with this disease than our family who is very new to it.

The radiation doctor said she would have an appointment for us by the end of Nov... but between her first CT scan in late September, and the PET scan she had a week ago, the tumor has grown 1cm. We're feeling like we don't have that kind of time to wait to start radiation and chemo, and I'm terrified that the radiation doctor just doesn't care, or isn't taking it seriously. I want my mom to start her treatment ASAP, is there any way I can get this moving faster?

On top of all this, I've come down with a cold right now so I am staying away and in the basement suite. Even if she hasn't started treatment there's no sense exposing her to a cold right now. Wondering how careful I should be - should I stay somewhere else til I'm better or just make sure my hands are clean when I'm upstairs briefly getting food? I don't know how careful I am supposed to be right now. I was going to be the only one home with her today but when I woke up sick I had my brother take the day off to take care of her as I don't want her to catch it... any advice?

Any help or advice would be great. I am going to talk to my dad about the wait time for treatment tonight, and see if speaking to her oncologist can get this ball rolling sooner.

Sorry I know this is super long, but I'm sure you can understand, I'm scared and feel new and lost to all this, it's all foreign and terrifying to me.

[MsC1210]

Hello Jackie and welcome to LCSC.

I am so sorry about your Mom's diagnosis but very glad you have found this site and joined us.

I cannot answer your questions but wanted to welcome you and say that there will be others who can give you excellent advice here and I am sure they will be along soon!

Please keep posting and let us know how we can help. Feel free to ask us anything as there is bound to be someone here who can offer advice and information!

Warmly

Christine

[LolasDaughter]

Hello Jackie -

Welcome! Likewise, so sorry you have a need for LCSC, but so glad you found us. My mom, too, has LC and we just passed one year since her diagnosis (a timeline of our journey is below). I'm sure others here will add more, but here are my initial thoughts (in a succinct, bullet point list, no less!):

- This uncertain, trying to get your feet on the ground and figure out what's going on and what is going to happen was the worst time in this journey for me, to date. Once you get started on the treatment plan, it becomes more of a 'one foot in front of the other' focus ("one day at a time" is popular with us) which can feel much more manageable.

- As far as chemo - you can find lots of information on this site by doing a search. I will tell you, it seems chemo is typically not as difficult these days as it used to be. My mom took a 'barf bucket' to every treatment and never needed it. She went through a rigorous treatment plan and her main side effect was fatigue. (She too went into treatments a bit 'worn down' and thin as she had what I believe was a paraneoplastic syndrome of face pain and had not been eating well and had been in horrible pain for many months prior to her dx.)

- Radiation - they say to stay on top of the sore throat pain. So if she has it, let docs know as soon as it starts. My mom's docs said that if you wait until it's 'bad', it's too late for them to really help with the pain. It's better to let them know as soon as she feels something and they can work to stay ahead of it. My mom did not experience that, so again, it doesn't happen every time.

- As a caregiver (especially an expectant mom!) take care of yourself! Your mom needs you to be healthy and strong.

- Any time you need support, come HERE! This is a great group of folks that have been there. And we REALLY care.

Keep us posted on how things are going for you and your mom.

Love,

Nicole

[blueeye]

Hi Jackie, I too am glad (but sorry) that you had reason to find us.

My Mom had small cell LC and had concurrent chemo and radiation. Her rad onc gave her Carafate at the beginning to prevent esophagous burning. Ditto to above post not to wait for help when experiencing esophageal pain. When she did start to experience some discomfort, he prescribed Lidocaine swish and swallow that she used for a long time. She had alot of fatigue with the radiation.

You should check out GRACE. It is a website by a thoracic oncologist who is wonderful! Dr.West will answer your questions and many issues have already been discussed and you can review those posts. The link is www.cancergrace.org.

As far as the cold goes, I was also my Mom's sole caregiver and like you got a nasty cold while taking care of her. Except with us, she was taking chemo and had very low white counts at the time. I HAD to be near her to change dressings on her skin burns from the radiation (that's rare, but if it happens to your Mom, PM me and I'll give you some tips). I wore a mask when that close and washed the heck out of my hands any other time. Also used Clorox wipes EVERYWHERE. She did not catch my cold.

Best of luck to you both, we all understand here. I know it is a scary time.

Hugs,

Leslie

[SandraL]

hi there Jackie. I am a fellow Canadian. As others have said, chemo these days can be quite tolerable. And they give you drugs to assist in managing the side effects. Everyone is different with respect to how well they tolerate it. The most important thing to remember is to drink lots of water and not to fuss too much if your mom isn't eating as much as she used to. Lots of water helps with the side effects.

Radiation side effects also vary from person to person and depending on the location of the radiation. By the sounds of it your mom will experience some pain. You have already received some good advice to help with that.

And finally, yes, the first part of this journey is so tough. And you have some other extenuating circumstances. But it does get better once you have a plan and are into it. I am sure you will find the professionals and staff at the cancer clinic very knowledgable, friendly and caring.

Please keep us posted on how you and your mom are doing. And just keep posting questions. Many here are eager to help you in any way they can.

Please take care

Sandra

[recce101]

Hi, Jackie, welcome. You don't ever need to apologize for a long, detailed post. It gives everyone more information to work with, which should get you better answers.

You've got a lot on your plate, that's for sure. And while it's easier said than done, you need to keep reminding yourself that you simply must take care of your own health — for your mom, for yourself, and for the new life you're carrying.

I agree with the others that nausea from chemo is not nearly the problem it used to be. They give "pre-meds" before each chemo treatment, either by IV or orally, which are very helpful, and your mom may also get a prescription to take at home. She should take this medication on schedule and not wait to see if nausea is going to occur.

If it's possible to move up the visit with the radiation oncologist, that would probably be a good idea, for peace of mind if nothing else. The medical (chemo) oncologist should be able to help with that or with reassuring you that late November is soon enough. Although the tumor looked larger on the PET scan, PET images are not as clear as CT images, and it may not be possible to accurately compare dimensions.

Best wishes and Aloha,

Ned

[Marci]

Hi Jackie,

Welcome, sorry we can't meet on better terms. First off, congrats on your baby coming - a blessing on the way to keep happiness around through all this. Very terrifying, scary, and everything with this illness, but everyone on here told be doable and we would get through it and so far we have come a long way since my mom's original date of diagnosis. I can only say that my mom's throracic surgeon did not want radiation to be started due to the fact that in the area of the chest it was being done if too much is done surgery would not be an option so he and her oncologist decided to do a strong chemo first to see if shrinkage would occur and then he would go in and do the surgery for the lung and remove lymph nodes in the chest area where the cancer was. My mom was stable for quite sometime after that. Although her cancer came back months later this is not the case for everyone. But, see all this is doable and your mom could have excellent results with all that her Docs want. Check into the radiation thing though cuz I think once thats done and too much of it surgery would be out of the question (I think). You will get through this. The thing about the cold - I would not leave but do keep your distance and maybe pick up those masks at the pharmacy. Feel better and know you have found a wonderful place of comfort.

Marci

[Nick C]

Don't apologize for length...it actually helps us to understand best.

I say an ounce of prevention. Perhaps limit your exposure until you feel better. And if you need to be with her and helping out, hey, do the mask thing. Most colds and what not are transferred by droplets...the masks do I good job of containg those.

And hand washing is HUGE!!!

[bohojack]

hey everyone, thank you all for your replies.

this is an awful thing for any family, but I am glad that there are support groups like this one. I really hope that everyone is right, and that this first part will be the hardest - seems like it's impossible to have a full day here without someone crying. I try my best not to, or to at least be away from my mom if I need to have a meltdown, but we all have our good days and our bad days.

Thanks blueeye for the website link. I checked it out and it seems great - I've already found myself understanding a few things more clearly since visiting.

I am really glad to hear that chemo is not as much an ordeal as it used to be. I think that there were a lot of preconceived notions about cancer in my family - much of my father's side of the family died from various types of cancer. When we heard 'lung cancer' I think we all broke down for a few days before being able to put one foot in front of the other, and try as we all might I think we still have some old fashioned notions about it - such as chemo still being so intensely hard on the body. It's very encouraging to know that people have gotten through it without too much in the way of bad side effects. And sooo encouraging that there are 5 and 10 year survivors out there. I've been reading threads on this site since my mom was diagnosed, and seeing these survivor stories is what I credit for me being able to snap out of the fog I was in. It was really great to see my mom read the stories, too, and see a little hope grow in her.

As for me, still sick and compulsively hand-washing/hand-sanitizing, and keeping my distance. My brother and dad both took a few days off work to be with my mom while I'm quarantined downstairs I am really looking forward to being healthy again and being able to spend time with her, though. Seems like all I want to do these days is 'be around my mommy.'

Thanks again to everyone, your encouragement and kindness is really appreciated. I hope that you're all experiencing some calm and some peace in your lives

[MsC1210]

Hi Jackie,

Just noticed that you had not posted again recently and wanted you to know I am thinkiing of you and your Mom.

Hope you will come and let us know how things are going...

Warmly

Christine

[bohojack]

Hi everyone.

Mom is doing about the same. Chemo and radiation haven't started yet but she had an acupuncture appointment last night. Nothing really to report there, as they say the results are cumulative? I'd never heard of acupuncture as a treatment for cancer symptoms but if it works, I'm (and my family are) all for it.

We've been taking it easy the last couple of days.. The depression is a huge factor for her. Not being able to get up and move around or care for herself makes her overwhelmingly sad sometimes, and feel pretty hopeless. There has been a little less chaotic crying from what I can see... or maybe I'm just not witnessing it as much? I'm not too sure. I went out and bought her about 15 different hats/toques yesterday. She asked me to pick a few up for when winter comes and she started losing her hair, and admittedly I went a little overboard! I feel this need for everything I do for my mom to be 'right' and pleasing, and I think sometimes I can go overboard on trying too hard.

She's not worried about losing her hair, though. We've been browsing around looking on ebay for a wig for her. She's been considering just cutting her hair now and having short hair until chemo, in the meantime we're just scoping out what kind of wig to get. Any suggestions from anyone? I've never bought or owned a wig, or known anyone who did so I'm a little lost with it. There seems to be a lot of different types and they can get REALLY expensive. I'm on maternity leave so I don't have a ton of money for it but I would like to get her something nice..

[SandraL]

Hi Jackie. Good to hear your update. If your mom really is depressed be sure to ask the doc about anti-depressants. Depression can be worse than the disease itself.

As for wigs. After fussing over many and changing my mind multiple times I bought a real expensive one that I wore maybe 3 times. I hated it. Instead I wore caps, hats and ballcaps. I even went back to work with a cap instead of a wig. To each their own but I think many of us ditch the wig idea. I think perhaps though they may be more popular for older women.

Yes they are expensive. I think my basic (or perhaps my extended health plan) paid for a good % of it though. You should check into your health plan. It may even cover caps etc. but you need to make sure you get a proper medical receipt.

Have fun shopping wigs...good to make fun of whatever we can. Take care

Sandra

[bohojack]

Well, mom's finished her first week of chemo/radiation. The chemo is done now, until late December when she'll have another round. Had a bit of a reaction to the cisplatin, but it wasn't severe. Her cheeks have been a bit rosy the past few days but we're keeping an eye on her temperature and so far she's seeming ok.

I'm pretty surprised that after only a week of this, she's experiencing less fatigue and less pain in her legs. It makes me so happy. On the days she has to go downtown to the clinic she is up and moving around a lot when she comes home; it's a really nice thing to see. Her mood has improved, too, now that she's a little more mobile. No nausea so far, and she's been taking all the anti-nausea drugs religiously, as she's afraid of the extra weight loss. The drugs are keeping her up a bit at night but otherwise she seems to be fairing pretty well. Had a bit of a cry today when she touched my belly, saying she loves the baby already. I was having a bad day due to other stress so I had to give her a hug and leave the room not to cry.

My grandma called a few days ago. That was difficult. She says my mom is pushing her away, and leaving her out. Really, my grandma is the type that needs people to coddle her and take care of her. And that's just not my mom's job through all of this. It's none of our jobs. I had a hard time not getting angry as I was explaining it's up to her to take care of her own wellbeing. That I'm 20, I'm the baby of the family, and I'm having a baby as my mom is going through this - I'm not one to cry to about not being coddled. Maybe that's cruel of me, but I have a hard time with talking to my grandma crying at me and expecting me to mother her... On top of that she has been asking my mom's doctors about her condition. She went as far as to ask our family doctor what mom's chances were. She then decided to tell ME what the numbers were (my parents had not told me and I didn't really feel the need to know, I'm keeping faith whatever the historical statistics might be) She asks if, whenever I'm alone, I'll call her and let her know what's going on with mom. It's hard to deal with. I know my grandmother lives alone and doesn't 'have anyone' but she could call one of her other children, and get support from them. My family is rallied around my mom and giving her the support and care she needs is our focus and is stressful enough, without also cradling her mother through this.

I think I'll cut my vent short here. I bought a wig for mom, not too expensive and in a cut she likes - we'll see if she wants to use it often or not. I'm going to have a mother's ring made for her for Christmas. I told her that (I had to explain that it would probably not be something expensive as money is tight and I'll be paying for it out of EI, but that I wanted her to have a mother's ring as I know it's special to her) and she seemed really touched. I'll update more later on, just thought I should stop in. I hope everyone is doing well during the holiday season, and getting to spend some warm time with their families.

[MsC1210]

Hi Jackie,

I am so glad to see your post this morning and hear that Mom is doing well so far with the Chemo. Sure sounds like she is handling things well and if the mild reacion is all she has had then that is great!

I am sorry about the situation with your grandmother. You have enough to take care of with your Mom and yourself and that precious baby you are carrying. It sounds like you will have to stand your ground with your grandmother. It is not an easy situation but it is necessary.

As far as the numbers and what your grandmother told you, IGNORE IT. Your mom is not a number and she is not a statistic. She is a unique individual and will react to the treatments and meds differerntly than anyone else. There is NO WAY to predict how long ANYONE has on this earth. Remember, there are people here on this site who have been fighting and surviving and LI VING for many, many years and there is no reason to believe that your Mom will not be the same.

Please keep us posted and let us know how Mom is and how YOU are, too~

Much love, many hugs and lots of prayers for you all

Christine

[SandraL]

Hi Jackie. It is nice to hear that your mom is fairing well with the chemo. Let's hope that keeps up.

Christine is right, ignore the stats. Your mom is not one of them and it is not helpful to focus on them.

Your grama does seem to be a bit of a bother. One that you just don't need right now. Continue to let her know you are very overwhelmed with looking after your mom and maybe she might start to get the picture.

Continue to take good care of mom, yourself and the baby.

Sandra

[bohojack]

Hi, thank you for the encouragement

It's good to have a place to come and talk about this with people who actually are of all like minds about it. Talking about it with some people seems to be more upsetting than reassuring as there's some members of our family/friends with no tact and only negative things to say. I'm glad to be able to come here.

Mom went to the hospital at 3 am today, with a 38.4 fever (I think this is somewhere around 101 or 102 farenheit?) She was there until about 8, got an IV drip with antibiotics. She had a chest scan done but they couldn't see anything looking like pneumonia. So they're saying there's either an infection somewhere in her body but they don't know where, or it is her body reacting to the tumor. Originally my mom was put on chemo about 2 weeks ago for obstructive pneumonia (by our family doctor not her oncologist) and now they can't spot any pneumonia.. it's frustrating. Even more so when they can say 'well it's not ___ but, really, we don't know what it is.'

Mom is resting for now, feeling a bit better I think. Anybody have experience with fevers during treatment? I've heard that it can be caused by the tumor - and I've heard 'no, cancer doesn't cause fevers.' So I'm kind of confused about it. Anything we should keep an eye out for? Mom's going back to the hospital every morning for the next few days for the antibiotic IV drip.

[MsC1210]

Hi Jackie

I don't know if the tumour or the chemo is causing the fever but the chemo does kill off everything, including good cells. Patients on chemo are much more susceptible to infections as their immune systems are compromised from the treatments.

I am glad Mom got to the hospital and on the IV antibiotics. Make sure she is getting plenty of fluids too as the fever as well as the chemo can lead to dehydration and THAT is definitely not fun.

Keep us posted and let us know how things are going,

Hugs

Chris

[jaminkw]

Hi Jackie, I was traveling and missed your introduction but have read all your posts. It sounds like, as my husband would put it, you have a full plate. This is all hard enough without intrusive family dynamics. Distance yourself the best you can and while taking care of mom, be sure to take care of yourself and the little one you're carrying.

I was in the hospital with pneumonia before I had treatment, in fact that's when they found the cancer. I had fever that had me on my hands and knees violently shaking. I would wake up in the night with my bedsheets and pillow coverings soaking wet. When I mentioned later to a chemo nurse that it was the pneumonia, she said no it was probably the cancer, and I had no tumor. So I'm as confused as you are and I don't think they really know. What is important is that it didn't matter relative to my response to treatment. The fevers stopped in time with the IV antibiotics and I've been in remission almost eight months since chemo. Hang in there with mom and think positive.

Judy in Key West

[bohojack]

Hello all, I hope your week has gone well!

Mom is done her IV drip and is now on a pill antibiotic. I don't know if I updated this before but the chemo my mom is on are cisplatin and etoposide (sorry if I spelled them wrong)

So far she is actually not feeling too run down from the chemo, which is very encouraging. She's starting to experience some hair loss (although she's always had a very very thick mane of tight curls so it's hard to tell unless she is pulling it out of the brush after a bath)

For the first few days after the ER trip mom was really beat and run down seeming. She slept all day when she got home. They did a blood culture and said she had a staff infection (staph?) which we are not sure how she got.

Good news! Mom is spending less and less time in bed. Her few good days during the chemo IV have now been contributed to the dexamethasone she was being given with the treatments. Weird because it's a corticosteroid much like the prednisone she was previously on (when they thought it was lupus) but at a higher potency. The prednisone didn't help her at all, yet this one seems to be the ticket. They've given her a prescription for it and she's experiencing a TON of relief from the leg pain. Up and about for a large part of the day, and I had a hard time waddling around keeping up with her! She came to the basement suite for a good part of the day to help me pack up her and my dad's stuff from the kitchen so I can use it, and puttered around in the baby's nursery for a while after the crib was set up. It's so good to see her smiling and mobile - it seems the days where she wasn't bedridden and crying were WAY too few and far between. No one should have to spend their days crying in bed in the first place, let alone for months on end.

She's very excited to meet her grandson. I am anxiously awaiting the scan she'll have at the end of the month to check on the progress of treatment and keeping my hopes high

[recce101]

Good update, Jackie. I'm very happy to see things are looking better for the two (three) of you. Best wishes and Aloha,

Ned

[SandraL]

Thanks for the update Jackie. I had the same first line chemo. I got through it fairly well. And used decardon for anti-nausea as well. I never had any nausea and yes that decadron gives you tons of energy, and sometimes trouble sleeping. But, I actually think getting off of the decardon after each round was when I felt the worst...and was well, really grumpy!

I hope she just keeps on doing well and you both just keep puttering about and getting ready for the baby. Nice to think about having a baby and a granehild in all of this.

Take care

Sandra

ps You may want to consider posting further updates in another forum such as family members/caregivers or test time/updates. Because many people would not necessarily notice that you have posted an update to your original post and think they have already read it. You will get many more people who care reading updates about your mom if you start a new post each time.

[jaminkw]

Jackie, thanks for the update. Sandra had a good idea about future posts. I usually can keep up with these followups because I use that feature that emails me about posts to subjects I am "watching." Don't even remember how I did it initially but I know not everyone uses it.

I can really relate to your mom's "bounce" back and trying to keep up with her. People say the same about me when I complain of diminished energy. And as one grandmother to a prospective one, that grandchild will do more for your mom's health and well-being than all the medicine in the world. Glad she has that to focus on.

Judy in Key West

[MsC1210]

((((Jackie))))

What a wonderful and uplifting update! I am so happy that Mom is feeling well and that she is able to get up and around more!

I am so happy she is having minimal side effects from the treatment.

Sandra and Judy have both had good suggestions about posting updates in a separate post or forum. You can always post in the updates forum as well.

Judy mentioned the email letting her know there are new replies to posts. Unless you un~check the box at the bottom of a new post that says notify me with a reply is posted you will receive an email notice. There is also an option at the bottom of each thread that allows you to stop watching a thread or begin watching. I hope this makes sense.. and thank you Judy for mentioning it.

Hugs to all

Chris

[Marci]

Hey Jackie,

Infections, Infections!!! We had gotten used to that because it seemed there was so much of it. My mom had numerous Urinary Track Infections, mouth irratations, other infections we don't know they would only tell us since they new she had a fever there was something her body was fighting something. As long as she is monitored by the Docs and her fever seems low and they have her on antibiotics it should clear on its own. I was always concerned for the breathing- chest thing like you said the watching out for pneumonia etc. Hope she feels well soon and the mother's ring is so sweet. I think Walmart has them reasonably priced.

Marci