When you know your symptoms are side effects of your treatment, but doctors won’t believe you


I wish I could crow ‘told you so’, but doctors at my cancer hospital still won’t tell me the truth

But now, I have something to show them !

Just received an email from America’s Journal of Clinical Oncology, (part of ASCO empire) saying almost half of female cancer survivors had persistent symptoms of chemotherapy-induced peripheral neuropathy (CIPN) for many years after treatment ended, experiencing functional decline and high risk of falls regardless of their age.

After years of the doctors here ignoring my symptoms. even though I gave them print-outs from ASCO, MD Anderson, etc, up pops the following report on another clinical trial.

Clinical Trials

Of 512 women cancer survivors enrolled in four clinical exercise intervention trials, 47% reported ongoing sensory loss in the lower extremities an average of 6 years after treatment stopped, according to Kerri M. Winters-Stone, PhD, of the Oregon Health & Science University in Portland, and colleagues.

If you want to see a video on her research, https://vimeo.com/152107622

Otherwise, here is the report that appeared in the Journal of Clinical Oncology.  

All I have to do now is try and convince the arrogant doctors at my “world famous cancer hospital”  that my condition is due to long term drug side effects, NOT all the other non-cancer related conditions they try to blame.

“Those with CIPN symptoms were 1.8 times more likely to experience a recent fall than asymptomatic women in the study, with the fall rate in younger symptomatic women exceeding that of the general older adult population by 24%, the study authors reported online in the Journal of Clinical Oncology.

“Our findings suggest that CIPN symptoms remain a significant and potentially life-threatening problem for cancer survivors well beyond completion of their chemotherapy and close to the time that many will transition out of oncologic care. CIPN must be assessed earlier in the clinical pathway, and strategies to limit symptom progression and to improve function must be included in clinical and survivorship care plans.”

  • Women with symptoms of CIPN reported
  • a slower gait
  • the need to take shorter and more frequent steps
  • significantly more disability that women who were asymptomatic.
  • The study also showed that the risk of falling increased by 1.5 times with each unit increase in symptom severity, particularly when symptoms were moderate or severe. (P<0.01).

Falls contribute to the economic and societal burden of cancer, with each event adding about $17,000 to the bottom line for healthcare costs, the researchers noted. Shorter survival times have been seen in cancer survivors reporting poor physical function, they added.

In an accompanying editorial, Nicole L. Stout, DPT, of the National Institutes of Health Clinical Center in Bethesda, MD, argued that “addressing the issue of CIPN-related falls requires a significant change in oncology clinical practice.”

The current study is a call to find ways to manage mobility and balance deficits early, she said, pointing to the authors’ earlier description of a prospective surveillance model for physical rehabilitation and exercise. Among other things, it recommended assessment of balance, sensation, and mobility before chemotherapy.

A fall can be catastrophic for the chemotherapy patient with low blood counts who sustains a fracture or head injury, confirmed Cathie Limbaugh, MSN, at Siteman Cancer Center/ Barnes-Jewish Hospital and Washington University School of Medicine in St. Louis, MO. Since younger patients often receive the most aggressive chemotherapies, they can also be at high-risk of life-threatening injuries, she said in an interview.

Often, patients are reluctant to report CIPN-related symptoms because they don’t want treatment to be interrupted. Other patients simply can’t bring themselves to ask for assistance when getting out of bed, out of a chair, or going to the bathroom — the highest fall risk area. “It’s a balancing act between symptom management and treatment outcomes,” Limbaugh said, adding that despite education and assessment, preventing falls is “an ongoing challenge right across the country.”

Study Details

For the study, researchers analyzed baseline data of female cancer survivors taken 3 months to 33 years after diagnosis. Average age of the participants was 63 years, average body mass index [BMI] was 29.6 kg/m2), and comorbidity scores were low. The prevalence of diabetes was 11%.

Women with neuropathy symptoms were significantly more likely to be closer to their cancer diagnosis than asymptomatic women. Participants with CIPN were also more likely to have the following characteristics:

  • Stage II or III cancer other than breast cancer
  • Obese
  • Less physically active
  • Worse comorbidities

Factors such as age, ethnicity, employment, education, marital status, diabetes prevalence, and past radiation therapy history were similar for both groups.

At baseline, all participants completed a questionnaire detailing self-assessed physical function and disability, and documenting falls in the past year. They also took a physical function test that included a timed chair stand and assessment of maximal leg strength, and gait characteristics such as speed, step number, rate, and stride length.

Current clinical practice guidelines that focus on pharmacologic management of CIPN, and patient reporting are suboptimal, the study authors emphasized. CIPN-related functional decline thresholds need to be established and functional screening integrated into the management of patients receiving chemotherapy, they said.

My Case
‘Experts’ tried to shake my belief that my problems were caused by long term side effects.  So with guidance for what to do from reading U.S. websites, I started to organise my own treatment (not popular!).
High Blood pressure:  I found out that high blood pressure is one side effect – so got that sorted.
*** Exercise definitely helps to strengthen muscles that might not have been affected, to compensate for those that are compromised, so I take up any hydrotherapy, falls class, community physio and exercise programmes I can slide in to
Lymphedema:  Don’t know if Lymphoedema is a contributory factor, but I pay for MLD to help with this
And get used to doctors pooh-poohing my theories – but now I shall point them towards this research!
 
Organising all my attempts to get appropriate treatment, I found the My Care, My Way programme was incredibly helpful.
It is interesting taking on the NHS big-wigs;  at times I just wanted to hit them with research papers that came through from world-recognised cancer centres, and wondered why I had discovered something that they should have known.

*** Current exercise guidelines for cancer survivors are not enough. Instead of general muscle-strengthening exercises for overall conditioning, task-specific functional training is needed to address mobility and proprioceptive deficits and to enhance postural stability and gait, Winters-Stone and colleagues said.

“Our data suggest that the etiology of disability and falls associated with CIPN symptoms may be unique; thus, efforts to define, implement, and evaluate the efficacy and cost effectiveness of specific prevention strategies for persons with CIPN are urgently needed.”

More research is needed to classify risk, expand screening, and create proactive fall prevention strategies, editorialist Stout said. “Until such time, the current evidence suggests the need for a broader perspective and altered clinical pathways to facilitate improved CIPN symptom management that addresses balance and functional mobility deficits both during active cancer treatment and through survivorship.”

Limitations of the study included its cross-sectional design and the use of self-report measures for clinical history.”

This study was supported by the National Institutes of Health. Winters-Stone disclosed no relationships. Co-author Peter G. Jacobs, PhD, disclosed a relationship with MotioSens and a number of patent holdings. No other potential conflicts of interest were disclosed. Editorialist Stout disclosed a relationship with McKesson Health Solutions.

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