Hi…diagnosed 3 days ago. Terrified of chemo.

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Hello, I’ll keep this brief. I know we could all write a novel regarding our own story! 55 year old female from Nebraska. Stage 1. No treatment for the last 3 years because there were no secondary problems. I now have a severe secondary problem which is lesions on my pelvis and femur. My femur fractured on Dec 13 (lesser trochanter fracture). Chemo is recommended and I am terrified and nauseated at the mere thought of it. I always vowed I would NEVER do it…but…I am housebound because of this secondary problem so I need to do something extreme :(  The chemo/immuno therapy drugs recommended are bendamustine/rituximab. I live clean, eat clean, and am extremely holistic. But I never used to drink water. Increasing water intake in the last 8 months has been great, but, it happened too late to mitigate the years of not hydrating properly. Our lymph systems need water to function properly.

I am on no prescription meds (well, except for some pain killers right now for the fracture. It’s excruciating) and I take many supplements. That could be another novel I could write LOL
I love dogs, gardening, photography, and photo editing. I also love motorcycles, jet skiing, and atv’s. But, sadly, I think I’m going to have to sell those toys due to my fracture and potential for future fractures. 
Looking forward to meeting others who are going through and overcoming this challenge!
  • Why am I terrified of chemo? My mom had colon cancer and was on almost continuous treatment for almost ten years. The strong, funny, brilliant woman that I knew disappeared and finally died in 2014. I’m also ultra sensitive to chemicals. I cant even take Advil (ibuprofen) or Tylenol (acetaminophen) because it makes my kidneys ache terribly. I cant take steroids…they make my spleen ache terribly. I cant be around yard chemicals…they give me a migraine and make me sick. I can taste the chemicals in processed food. So, I am so scared of how my body is going to respond to the bendamustine and rituximab. Plus, the first treatment is the big one. A good friend told me, “Stop calling it poison. Words have power. Find a new word!” Maybe I need to adjust my thinking, but it’s hard! Any suggestions on some new words for me? Grin

  • Hi  and welcome to this corner of the Community. I am Mike and I help out around our Lymphoma groups. I don't have Follicular Lymphoma but was diagnosed way back in 1999 with a different low grade, rare, incurable but treatable type of NHL Stage 4a so I know this journey rather well.

    I see you are in Nebraska USA so a warm welcome across the big pond. The first thing to understand is the Macmillan Community run by Macmillan Cancer Support is a UK based charity too you will find 99% of all the information will revolve round our UK Health System. Our National Health Service (NHS) is very different for the US system....... but the drugs used are often the same.

    The R&B treatment is used a lot as first line treatment. I do understand you concerned especally when you have a family member who passed away from their cancer.

    From reading your posts the first and very important thing I pick up is hydration or lack of it...... and the issues with drugs like ibuprofen..... if you don't drink your kidneys will complain........ with any medication.

    These drugs are very clever and as my good Pharmacist friend said to me on the day I started my treatment  - see it as educated bleach...... it cleans as it goes........ and it's not meant to make you ill..... it's meant to evict your cancer from your body. But sometimes it's hard dealing with unwanted squatters so my mat get some bruises during the eviction process.

    I had 6 cycles of 5 days in hospital so 120hrs IV and over 750hrs of chemo during my first main treatment and this did included Rituximab....... I had no real problems with this........ and was drinking a minimum of 2 litres of water every day and 8 years on I still do........ I did go on to have further treatments (hit my Community name to see my long story)

    Happy to chat more ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • R-Benda is not too bad as chemo goes. No hair loss which is a positive. I got into complete remission last year with it. Just imagine the lymphoma melting away as the stuff goes into your body. It's good stuff.

  • Mike, thank you for your thorough response! And I did quite a bit of reading on this forum before I joined and I see you are a very active member who offers so much support to people who are fumbling in the dark with 1,000 new words, invasive procedures, so many drug names, and a diagnosis that always (initially) fosters a sense of doom. You are a treasure!
    Yes, my main goal is to quell my fears and be brave enough to follow through and make the call. I am so grateful that I have an oncologist who is kind and patient. He respects my fears about CT and PET scans (radiation) and about chemo. So he is giving me time to process, research, and make the right decision.
    So most of you here are from across the pond?? Dang! I wish these emails could talk! Americans really are suckers (in a good way!) for those accents! I can tell you that the US healthcare system has gone downhill so much in the last ten years. Making a doctors appointment years ago was a simple process. Call. Make appt. Go see the doctor in a matter of days. Now it seems that any appt you make is a weeks-months long process. If I called a brand new doctor tomorrow, I would guesstimate that the appt date would be in April. So all the kind souls in my life who have suggested that I get a second opinion are well-intentioned. But my secondary condition is pushing me to take action now. I cant linger like this for months. The lesions will still be there. And the fracture that is trying to heal right now over a lesion? Well, it’s a fracture that’s trying to heal ON TOP of a bone lesion! 
    Water Water Water! Yes, I drink a solid 70-100oz’s a day (2-3 liters…sorry…we are a stubborn country and never did transition to the metric system!) Getting up to pee with this fracture is torture, but I know it’s for the greater good. SunglassesYellow heart
  • Londoner12, thank you for putting a positive spin on the RB! I keep reading that people have heard horror stories about it, but then they go on to talk about their experience and it is not a horror story. Honestly, I haven’t run across anyone yet who has had a major issue with it. So I am tucking away all these little words of encouragement and they really are helping. Thank you!

  • Hi again you are on the whole going to see more posts that lean towards the positive rather then the negative.

    I think that once you have been through your treatment your initial fears and anxiety are replaced with appreciation and thankfulness that there are treatments that are effective and although our type of Lymphoma is incurable it is very treatable resulting in positive outcomes...... unlike many other cancers.

    You will see from my community name I live in the beautiful Highlands of Scotland with the accent to go with it Wink

    It's good that you have reached out (across the pond) and are getting some of your questions answered as this helps get your mind round these treatments and will help you move this forward.

    I find it amazing the amount of folks from the US and other places around the world that connect in with the Macmillan Community. People often say that there is just not anything like this where they are - hard to believe to be honest but glad that we are here to help and support.

    Our National Health Service (NHS) was established back in 1948 and has been serving the UK well over these 74 years providing care for all at their point of need regardless of background or wealth.

    ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • I found this site by doing a general search on lymphoma and bone lesions. Someone here had made a post looking for others experiencing bone lesions. I loved the community, the sheer number of members, and the ‘veterans’ such as yourself that reach out to offer support, love, and encouragement. We are all human and having the same human experience. The internet has turned a 6,500km distance into a split second connection!
    Once I start treatment, I will give honest updates underneath the Diagnosis and Treatment section. I do have a laundry list of questions to call and ask the doctor tomorrow! As I’ve been reading other peoples’ experiences, it has triggered some questions about things I never thought of…like diet, supplements, and types of nausea meds they will use. It’s possible they were going to go over that when I finally pull the trigger, but at least I am becoming more knowledgeable about what to expect and the do’s and dont’s during treatment.
    Scottish accent. Irish, English, Australian. They are all music to our ears! Blush I would love to visit Scotland some time. Such an incredibly beautiful country! Maybe after all this Covid crap is nothing but a bad memory… 
    Nebraska is smack in the middle of the country. You can drive for over 8 hours and see nothing but corn and soybean fields and center-pivot irrigation systems. Our little acreage has thousands of trees, so I feel blessed to enjoy all the beauty that our ‘plains state’ has to offer. I could do without the packs of coyotes and the occasional mountain lion, though! Hey, they were here first. So we respect their space…and they, well, they offer me some unique photo opportunities. A six foot fence (1.8m) doesn’t hurt, either!
    Technical question - how do you add a space to text? The editor keeps stripping out my paragraph spaces when I post. I asked on the support page, but I’m impatient and haven’t received an answer yet Laughing
  • Good that you are making your list…… and let’s look for answers that helps you navigate this better.

    Nebraska sounds amazing. The Highlands can be wide open rugged mountains and beautiful glens in one drive…… but no Mountain Lions….. just haggis Wink

    What type of device are you using?

    I am using my iPhone for this post and I get my paragraph breaks by hitting ‘return’

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • OMGoodness! You got me! I looked up haggis and the pictures made me wish we had some fabulous-haired little rodents running around. LOL. And then I found out I had been had. Akin to our jackalope, snipe, and the dreaded chupacabra! And the haggis food? Y’all can keep that
    MacBook Pro. Firefox browser. I draft my posts in a blank email, copy, paste. The breaks show up when I paste into the field on the forum, but disappear the second I post it. Alas, I have found a workaround by using an ellipsis. There’s more than one way to skin a haggis Sunglasses
  • I mostly use my MacBook Pro on Google and have no issues but I am sure the Macmillan Admin team will get back to you soon on your technical support post.

    Yes the Haggis is indeed a food and go way back to a time when Rowle were so poor and hungry that nothing went to waste.

    Where we stay we are only 10min drive from the shores of Loch Ness the place where Scotland's rarest water based beasty can be found Wink

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge