Taking my first chemo dose tomorrow- Cisplatin+Gemcitabine. Worried about few things please comment.

Andrea39

Hi all

I hope all of you are doing well. I was recently diagnosed with right tonsil cancer with right side neck level II lymph nodes involved and HPV+. Stage details include T2N2M0; which is Stage II as per the new guidelines on HPV+ oropharyngeal cancers, and Stage IVA as per old standards. 

My doctor has suggested the following treatment plan. 

> Start with the chemo comprising 2 cycles starting on 18th of March (TOMORROW). 

[ Regimen detail: Cisplatin, Gemcitabine ] 

[ Week 1: Cisplatin+Gemcitabine; Week 2: Gemcitabine; Week 4: Cisplatin+Gemcitabine, Week 5: Gemcitabine.]

Later he would bring radations 7 weeks. 

My questions are as follows:

1. First, anyone in similar situation has went through the same treatment as I am undergoing? 

2. Second, I have read somewhere that Gemcitabine is not very common in this treatment. However, my oncologist has prescribed it for me to go with Cisplatin. Any comment on this? please.

3. Third, I am given sequential treatmen plan, that is, chemo first then rads. However, there are many here who have received chemo and rads concurrently. Is there anyone who has been given treatemnt in the order I am being given? Can it be a significant factor in the overall treatment and healing?

4. Fourth, just for a some reconfirmation. My Dr ordered the PET CT scan for whole body, but my PET CT scan reads that it covers Skull to mid-thigh. My question is that does it cover brain? The PET CT report does not show any issue related to brain except. Actaully I am feeling some heaviness and some headache (not so svere though). Just fear that there might be some problem in brain too. Or cancer might have been spread to brain. Should I be worried about this. My doctor has not taken it seriously, but I dont know why I am worried about this. Is the PET CT scan sufficient to rule out any brain related issues I am worried of? Please comment.    

Since my treatment starts tomorrow I am really having a lot of anxiety and feeling worried about whether my treament is going in the right direction or not. I would be highly grateful for your comments and sharing experience that is related to my quaestions and worries. 

Looking for your input.

 

CivilMatt

wear clean underwear

A39,

TAKE THE NAUSEA MEDS EARLY.

1.  My treatment plan was different, but the goals and the difficulty were very similar.  Your chemo is not the same as my Erbitux and the side effects are different.  Keep your team informed on ALL side effects.  They may want  to modify if needed.

Having the rads at a later time may help you to focus on any chemo issues easier.  You may just limbo under the problems and be ok or something in the opposite direction may occur.  I don’t know, but  I hope for the best.  And really and truly, not everyone gets hit hard. I hope you are fortunate, but just encase, be ready.

2.   This is the first I have heard of Gemcitabine and I do not know anything about it and Doctor Google is not on my list of check-ins today (I need to go work on an old galvanized wash tube I am making into a planter, because spring is coming).

3. There are a few who followed your type of plan, but you are in the minority.  That may be “minority good” and I would think your doctor could back up this plan with easy to hear and understand sentences.  Ask him to explain.  I am not qualified other than being here to say yes or no to your question.  It stretches out your treatment plan and if you were hoping for Memorial Day to feel better and be done you may have to wait until The 4^th of July or my brothers birthday in August or my birthday in September.

4.  You should not worry about your cancer (HPV+) spreading to your brain.  HPV prefers Tonsil and Tongue (it is all in the cell type).  They used to say “eyes to the thighs”, but the limits of the PET/CT SCAN have been modified.  Matter-of-fact, my PET/CT SCAN showed activity in my back door, but a colonoscopy prove it was not serious (that is all I need).  If I may be so bold “IT IS NOT IN YOUR BRAIN!!!  (I think)”.  You will have plenty to worry about, much of it needlessly, but your focus will change and the things for you should become clear and will fall into focus.

I had to take 1 Lorazepam tablet every day for  mask day (rads for  you later).  There are meds, suggestions and prayers for all that will be part of your life.

Try to relax, be prepared, have all the meds and home products, keep your team informed, drink plenty of water to stay hydrated and eat till you have all the nutrition a H&N member needs.

Matt

Andrea39

CivilMatt said:

wear clean underwear

A39,

TAKE THE NAUSEA MEDS EARLY.

1.  My treatment plan was different, but the goals and the difficulty were very similar.  Your chemo is not the same as my Erbitux and the side effects are different.  Keep your team informed on ALL side effects.  They may want  to modify if needed.

Having the rads at a later time may help you to focus on any chemo issues easier.  You may just limbo under the problems and be ok or something in the opposite direction may occur.  I don’t know, but  I hope for the best.  And really and truly, not everyone gets hit hard. I hope you are fortunate, but just encase, be ready.

2.   This is the first I have heard of Gemcitabine and I do not know anything about it and Doctor Google is not on my list of check-ins today (I need to go work on an old galvanized wash tube I am making into a planter, because spring is coming).

3. There are a few who followed your type of plan, but you are in the minority.  That may be “minority good” and I would think your doctor could back up this plan with easy to hear and understand sentences.  Ask him to explain.  I am not qualified other than being here to say yes or no to your question.  It stretches out your treatment plan and if you were hoping for Memorial Day to feel better and be done you may have to wait until The 4^th of July or my brothers birthday in August or my birthday in September.

4.  You should not worry about your cancer (HPV+) spreading to your brain.  HPV prefers Tonsil and Tongue (it is all in the cell type).  They used to say “eyes to the thighs”, but the limits of the PET/CT SCAN have been modified.  Matter-of-fact, my PET/CT SCAN showed activity in my back door, but a colonoscopy prove it was not serious (that is all I need).  If I may be so bold “IT IS NOT IN YOUR BRAIN!!!  (I think)”.  You will have plenty to worry about, much of it needlessly, but your focus will change and the things for you should become clear and will fall into focus.

I had to take 1 Lorazepam tablet every day for  mask day (rads for  you later).  There are meds, suggestions and prayers for all that will be part of your life.

Try to relax, be prepared, have all the meds and home products, keep your team informed, drink plenty of water to stay hydrated and eat till you have all the nutrition a H&N member needs.

Matt

Thanks Matt for your rsponse.

Thanks Matt for your rsponse. Your posts have always been informative, straight yet encouraging. Thanks for all your advice and suggestions [including that of a clean under wear :-)].  I hope I have the earliest recovery from the disease and its treatment side effects. Please keep praying for me.  

Wednesday

Headaches and heaviness

Hi! I have a similar diagnosis (hpv tonsil cancer with spread into lymph node). My doctor team has proscribed a different treatment plan than yours, but I wanted to comment on your message about headaches and feeling heavy. I've had the same thing for several years before diagnosis. With me, it is not just headaches but full-on migraines as well. I've been trying to get the heaviness figured out for a few years but all the tests have shown nothing. No thyroid issues, no vitamin issues, etc. etc. So, finally now this cancer. I asked if the heaviness could be caused by the cancer. One doc said no. Another doc said possibly. He said that our bodies are complete systems that work together. Maybe the heaviness is our bodies trying to fight. He said everything much better than I am now, but this is on my phone and being over 40, I find it difficult to type on it. Ha ha.

Ask your doc about the brain being in the PET though. I asked the same question to the nurse doing the scan and she said that the brain doesn't show the same in the scan. I meant to ask the doctor though and I forgot. I'll try to remember next time.

Best of luck!!!

 

DarcyS

Similar protocol but different chemo

My husband had ssc of the piriform sinus, T1N2bM0.  Stage 4. His treatment started with 6 weeks of induction chemotherapy with cisplatin, pataxol, and cetuximab.  He also had everolimus as part of a clinical trial.  After this, he had 50 inpatient radiation sessions with concurrent 24/7 chemo.  They were pataxol, 5fu and hydrea. One week inpatient and one at home for 10 weeks.  5 1/2 years later, life is good with very few side effects.  I remember the very worried stage before starting treatment and questioning the protocol.  His doctors said starting with the chemo would help shrink the tumor and then the radiated area would be smaller.  It would also hopefully, catch any stray cells that had left the head and neck area.  Surgery would have been plan b if this didn't kill the camcer.  No surgery was needed.  Hang in there, my husband felt better emotionally once treatment started and he was actively fighting and felt like we were doing something.  The waiting part was hard.  Wishing you healing and health!

possumtrot

ACUPUNCTURE

I had HPV+ left tonsil and one node same side. Finished concurrent radiation, cisplatin chemo (7 weeks) this last September.

One thing I'd recommend, which I did at the strong urging of my Nurse Practitioner niece and message therapist daughter is had acupuncture weekly throughout treatment. This for the chemo side effects of peripheral neuropathy, tinnitis, etc. I've had none of those side effects, which were a major concern of mine. Hard to prove the acupuncture was the cause, but it didn't hurt!

 

Good luck with your treatment, I hope for the best for you.

johnsonbl

NCCN guidelines

https://www.nccn.org/professionals/physician_gls/pdf/head-and-neck.pdf

 

Ask your provider to show you how your treatment plan fits within the NCCN guidelines for your specific cancer type.  These are clinical guidelines that spell out the specific treatments for you based on your tumor location, size, lymph node involvement, HPV status, etc...  There are always exceptions to the rule but your team should be able to explain why you are receiving what you are receiving and why there might be a variance from these protocols.

These were just updated on Feb 15th with a whole new section re: HPV related disease.  Anyone can sign up for this website...it's pretty sciency but it's worth learning about.

Your headache is stress.  I'd bet dollars to donuts.  :-)

Brandon

 

ppensom

I also was diagnosed with

I also was diagnosed with Stage 4 Oropharangeal cancer in mid 2015. I had the Radiation and Cisplatyn only. I had 2 treatments of chemo and at week 6 I couldn't work any more. I had real problems swallowing because of the burn and swelling in my throat. This coupled with the cisplatyn which affected my digestive system made it hard to eat anything solid. 

Don't let them even consider putting in a feeding tube. Hang in there and it will all pass.

I was cleared of neck cancer in Jan of 16 and was fine until August of 16. I had a follow up scan and they found some nodules in my left lung. I went back on chemo. I had a 3 drug coctail and that didn't stop it. Then I had cyberknife radiation to target the larger sites. Then Opdivo for 6 weeks.  Now its August of 2017. Then I developed a lot of pleural fluid in my left lung and was drained of 1.5 liters then 2.5 liters. I had a biopsy of some nodules in the pleura and they were the same strain as was in my neck. I had a pleurodesis on my left side which stopped the fluid buildup. Then I was put on Paclitaxel for 3 months with no reduction in progression. so the triec Docetaxel for 2 months with no success.

Now its March 2018 and I'm back on Cisplatyn + Erbitux on a 3 week cycle. 2nd and 3rd weeks are just erbitux. We will see if that can slow everything down.

Shallow breathing and no energy is my biggest problem now but we must never give up the fight. I hope you can be cleared permanently. There is no better feeling than to be told you are cleared. even though in my case it came back i can only hope to get that good news once again.