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Oncologist visit .... treatment ?s

Daughters3
Posts: 7
Joined: Mar 2013

Hi ladies. I wanted to update you all on my Mom after all the great advice you gave me. My sisters and I went with her to her oncologist appointment this morning. It all went as you said it would. Her cancer is stage 1, but because of type (serous) she will have the sandwich method treatment: 3 chemo, 3 weeks apart; 3 internal radiation and then 3 chemo to finish up. He told us there is a 90 % cure rate if she follows this plan. Not sure I believe that, but heck, he's the highly experienced chair of his department at a world class cancer hosptial - and it made Mom feel better to hear. He said recurrance would be between a 40-45% chance if she does nothing so that's a no brainer. So, so so glad we got a third opinion. It was a bit disturbing though that we could tell he never read through her records completely though. He was talking about "scans to determine if the cancer is in her lymph nodes, etc. and a possibe second surgery." I was like... she had a gyn/onc do the staging with lymph nodes, omentum, etc., during her hysterectomy. We know the cancer was no where else. He was surprised and all. Proof again that you always need to take someone with you to these types of appointments! My mom was in a fog - she would have just said yes. But I know we are just there for treatment and it is the best location for my Mom!! So basically she is feeling better tonight, but was completely devastated all day. I do have a few more questions if you guys would be so kind to share your experience. Is the Taxol/Carbo horrible? Did you have bad side effects? How about the 3 internal radiation? Did you lose your hair (this seems to be bothering her most )? Were you bedridden or did you keep some regular activities? I guess overall I just want to be prepared. Also, any suggestions on wigs?

We start treatment a week from next Thursday. We will be there with her through it all and in my heart I know she will be fine. I told her I will stay positive for her!! I also want to add I pray daily for you all!! Sincerely, Ali

NorahS
Posts: 93
Joined: Dec 2012

...and very happy for your Mom and her family. 

Your Mom will be getting the treatment that she needs - 3 chemo, 3 weeks apart; 3 internal radiation and then 3 chemo of carbo/taxol. If your Mom finishes this course of treatment she likely will be firmly in remission - she will still have regular checkups for the rest of her life.

UPSC is well-known for 'hiding out' in the body - thus the chance of 40-45% of recurrance if she does not do complete treatment. If she does complete treatment - then there is a 90% chance (using the statistics that this onc gave you) that she will be in remission (he used the word 'cure' - but if it's not 100% then you are not really guaranteed 'cured' are you? - so I prefer the term remission). 

Your Mom will have followup care at the completion of chemo/radiation - at first every 3 months, then every 6 months, then annually - for the rest of her life. Such followup care might include scans to determine if she is still in remission and to catch and treat it early if she does get out of remission.

 

People react differently to chemo and radiation and there is no telling how your mother will react to either treatment.     

 

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

First off, glad you got the 3 opinions and have found a good fit for your mom.  2nd and even 3rd opinions are well worth the time and expense as find they seem to put one  in the right mind set on direction for treatments.  

Also, when they tell you about statistics don't take notes in ink....I've seen many people with stage 4, given a year or so and by George they're still here some 5 years.  The research on many cancers just aren't accurate and these medical docs throw that out there thinking it's helpful, but not always.  When I had my initital consult with the GYN-oncolgist and he started with statistics, I simply told him I do NOT want to hear them.....as we're all unique.  

As the plaque reads in my oncologists office --

YOU ARE A STATISTIC OF ONE!!

 

I had the same chemo protocol as your mom...and yes she will loose the hair in approx 14 days after the first chemo infusion.  Be prepared as she'll be like a shedding puppy, so try and get scarves and wigs if she's comfortable.  Note, chemo kills good and bad cells, so out goes the hair EVERYWHERE on her body.

Chemo side affects?  Yes we all have them and unique to what we'll see.  I had nausia type symptoms for approx 3 days after chemo infusion, plus very tired.  I found mine to be cumulative, meaning after the 3rd chemo the latter ones drained me and had a bit worse symptoms.  They will monitor her blood to make sure the counts aren't down.  If counts down, they might postpone the infusion for that day.  If you ever have questions during the treatments I would ask the RN's or doc, as we just don't know what's going to happen with side affects.  Good to bring to doc attentions anything out of the ordinary.  

A good friend of mine is an RN in oncology dept in California.  She guided me during my treatments.  The big thing was to listen to the body as chemo drugs are very toxic, plus get plenty of fluids and rest.  I learned to rest for approx 4 days after chemo and by day 5 I was back out running/walking and moving around a bit more.  Be watchful of being around many people after the few days from chemo as our immune system is down, therefore, more susceptible to sick people.  

I had EXTERNAL RADIATION so can't give any helpful comments for internal.  Feel internal is easier, but that's what I've heard.

Be there for your mom during the treatments, as she'll need some guidance.  We've all been there, so know your mom will be fine.

Hugs and best to you!

Jan

 

 

Ro10's picture
Ro10
Posts: 1483
Joined: Jan 2009

I too had the sandwich treatment with Taxol/Carbo.  Although I had 28 external radiation treatments followed ny a 28 hour internal radiation treatment.  Like Jan said your Mom will lose her hair about two weeks after the first treatment.  This includes eyebrows and eyelashes, too.  The American Cancer Society sponsor a "Look Good, Feel Good" program that is free and offers tips on make up and scarf tying, plus free make up.  I found this programming very helpful.  I got my wig free from the American Cancer Society.  A lot of chemo centers have head coverings available, too.

as far as side effects everyone is different.  She will get nausea pills to take if needed.  Drinking plenty of fluids is very important . And avoiding constipation is crucial.  I found if I took stool softener s the day of chemo and a few days after chemo I did not have a problem. I also drank apple juice while on chemo.

you Mother is lucky to have you for support.  I often think it is harder on the caregivers than the person getting chemo.  The stress and worry can be overwhelming.  You just have to take it one day at a time and see how things go.

i found chemo much easier than I had built it up in my mind.  I hope you Mother is getting a port inserted.  Chemo is Cheryl hard on the veins.  I did not get a port at first, and my veins have never recovered from my first chemo treatments.

come back with any questions you may have.  Like Jan said the chemo nurses are a great resource.  Your chemo center may have a library or resource center where you can get printed information to refer to.  I will keep you and you Mom in my prayers.  In peace and caring.

HellieC's picture
HellieC
Posts: 460
Joined: Nov 2010

Firstly, I am so sorry that your Mum (and you) are dealing with this beast.  But you have a way forward now, and there are lots of us here who can help and support whenever you need us.

I had 6 cycles of the carbo/taxol regime (not the sandwich treatment, as my cancer is not the serous variety).  The side effects do vary a lot between individuals.  But the hair loss is inevitable.  Try to get your Mum to a wig supplier before she loses her hair, so the supplier can see your Mum's usual style and can offer suggestions for appropriate styles, colours etc.  I ended up getting a wig which was almost identical to my normal style, but half way through chemo, I decided to change and went for a short pixie crop style, which somehow looked more natural on me. So be prepared to experiment.  I also wore scarves and tubans around the house, as they were very soft and comfortable.  And, yes, you do lose every stitch of body hair from every conceivable place!

The side effects for me were quite tolerable.  I was OK for 36-48 hours after each dose, then I would get flu-like aches in my legs for about 3-4 days.  I made sure that I had no appointments during that time and just rested, took normal painkillers if it became annoying and caught up with reading, watching films and just generally chilling.  Your immune system is very low in the 10 days following each chemo dose, so it's wise to stay away from public places and from any gatherings where your Mum might pick up an infection.  Do not let any well meaning friends or family (or their young children) make close visits during this time if they have even the slightest possibility of a cold or infection!  They need to understand that this is very important and that they could put your Mum's health at serious risk if they roll up to visit with the sniffles!

I didn't really suffer from nausea, as I was given drugs to control this for about 4 days after each dose.  I tried to drink a lot and used meds for the constipation which everyone seems to get.  I did find that the side effects were cumulative, but only marginally so - after my last dose, I think that it took me an extra day to be up and about again. 

Your Mum will get through this.  For me, the thing I worried about most was the hair loss.  But once I realised I had it under control with wigs, scarves etc., I was fine - it certainly makes getting ready in the morning a whole lot quicker!

Wishing your Mum (and you) an easy path

Helen

Daughters3
Posts: 7
Joined: Mar 2013

Thanks so much for taking the time to respond and for all the great advice! You are all so kind and your words have made me feel so much better!! I'll keep you posted- we start a week from Thursday. Mom's port goes in two days prior, but they saitry hey would use a vein the first time as it would be too sore. Hope that's ok?? Anyway hope you all are enjoying some nice weather this weekend. Hugs to you all!! Ali

HellieC's picture
HellieC
Posts: 460
Joined: Nov 2010

I'm sure your Mum will be OK with them using a vein for the first dose.  I never had a port fitted (I am in the UK and it doesn't seem so common here) and managed with veins all the way through.  If they are worried about finding a suitable one, sometimes they ask you to soak your hands/arms in warm water for a few minutes, as this dilates the veins and makes it easier.

Hybridspirits's picture
Hybridspirits
Posts: 152
Joined: Nov 2012

I also never had a port and the trick for me was drinking a lot of water the day before all the way up to the treatment.  This keeps you from being dehydrated and your veins are easily assessible.  I am one to have issues with giving blood and doing this was just perfect.  I ended up never having the port as each time they were successful on finding the vein on first shot due to being very hydrated.  I also read the earlier conversations.  I went to a cancer society look and feel great class.  It was free.  We got over 200 dollars in free cosmetics,  named brands,  learned how to use it (even how to properly take care of your eyes if you looses your brows and lashes)  We also received brand new wigs.  We tried them on and they were great.  That is the one i use now.  I receivd a free Racquel Welch one and when i googled this particular one it sold for 350.00. 

To dhtis day i follow what I learned with the makeup.  I also met some nice woman who were going through the same thing.

Good luck to your mom and she is going to do great

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